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

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

2 Suffered a serious head injury? We can help brighten your future. At Harris Fowler, we support you every step of the way. We understand the complexities of your injury and how your life is affected by it. We look at the long term impacts of your injury and do our very best to achieve the highest level of compensation, rehabilitation, medical care and support services for you. Our friendly, experienced and specialist team will take the burden of making a claim away from you and provide a helping hand to guide you to a better future. We understand that it s not just about compensation. It s about rebuilding a life. We are an accredited member of the Headway (The Brain Injury Association) Solicitors List; a panel of specialists dealing with different levels of head and brain injury claims. To find out if you could claim compensation CALL FREE or VISIT us online harrisfowler.co.uk It s NO WIN, NO FEE. Harris Fowler is a trading name of Harris Fowler Ltd, authorised and regulated by the Solicitors Regulation Authority No

3 The Brain Injury Handbook Rehab Group (UK) Head Office, Pavilion 7, Watermark Park, 325 Govan Road, Glasgow, G51 2SE Tel: Fax: Rehab Charity Number: UK Momentum Charity Number: SC The Brain Injury Handbook 1

4 Acknowledgments The publishers are grateful to the following people who gave their valuable time, support and expertise to the production of this handbook, inc. Prof Mike Barnes, Camilla Barber, Dr Andrew Bateman, Alister Berry, Bill Braithwaite QC, Never Gunje, Pam Foreman, Simon Garlick, Erick Mason, Helen Mason, Dr Bill McKinlay, Jean Martin Savage, Jim Weir, Serwiusz Filipowski, Keeley Parkes, Wendy Foster, Chris Stewart and Richard Shearing. 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, please talk it over with your medical team. copyright 2014 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 Keeley Parkes, recent Momentum Skills client (see her story on pages 82-83). 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 5 Professor Mike Barnes MD FRCP Introduction 7 Sean Egan, Chairman, Rehab Group A word from the Editor 9 Jonathan Smallman Section 1 13 Understanding brain injury and the brain Section 2 19 The brain injury itself Section 3 23 The consequences of brain injury Section 4 55 Recovery and rehabilitation Section 5 75 Returning to work after a brain injury Section 6 89 Legal issues Section Useful contacts and resources The Brain Injury Handbook 3

6 A strong network of specialists on your side ompsons were brilliant, absolutely brilliant, n hing was too much trouble. Patrick s solicitor would come and visit Patrick every week at the hospital. Maisey, Patrick s mother, Thompsons brain injury client At Thompsons, we have helped thousands of people to adapt and enhance their lifestyles following a brain injury. Our serious injury team brings together the most dedicated serious injury solicitors from across the UK, offering expert advice wherever you are. Our solicitors are members of Headway and UKABIF, and have close working links with charities, including The Child Brain Injury Trust, dedicated client support co-ordinators, case managers and occupational therapists. You can trust Thompsons to access the specialist information, rehabilitation support and legal advice that you need. Call or visit Standing up for you

7 Foreword Professor Mike Barnes MD FRCP Consultant Neurologist & Consultant in Rehabilitation Medicine. Honorary Professor of Neurological Rehabilitation Clinical Director, Christchurch Group. It is a pleasure to write a preface for The Brain Injury Handbook. It is a remarkable achievement that such a wealth of information has been put into such a useful and accessible format. This is a very interesting publication and should be available to all those who have had a brain injury and their families. It is also full of valuable information for the health or social care professional involved with brain injury. The first section provides a very useful, clear and simple overview of normal brain functioning. The second section then discusses the possible consequences of traumatic brain injury with straightforward explanations of the concepts of coma and post-traumatic amnesia. The third section is a really helpful resume of the consequences of brain injury, including such important difficulties as fatigue, cognitive functioning, memory, executive skills and communication. The common problems of anxiety and depression are also well described. Behavioural problems, particularly disinhibition, impulsivity and irritability are well covered as are changes in sexual behaviour. This chapter also emphasises the really important consequences of brain injury for the family. Section four covers the roles of the various therapists and professionals in a rehabilitation team. There is a very sensible and useful page on top 10 tips on communicating with someone who has a brain injury. There follows an important section on returning to work after brain injury. Regrettably all too often health professionals feel that their job is done once the rehabilitation process is complete whereas many people can actually get back to work with the right support. There are closing sections in relation to understanding the legal issues often involved in brain injury, and there is an excellent and comprehensive list of useful contacts and resources. Finally, I d like to draw your attention to those pages that have been prepared by people who are living with the consequences of an acquired brain injury. These accounts give personal evidence of the impact of brain injury and inspire with reference to the longer term nature of the condition. First-hand evidence that is only matched in importance by the people who have experienced the hard edge of brain injury. Overall, this is a very useful, well written and clear publication that should be widely available to those with brain injury and those who strive to help them. The Brain Injury Handbook 5

8 roof of the proposed design to be used for your advert. The actual size may have been altered to fit the proof sheet. sif you would like ny alterations, please log-in to your account using the link we sent you on and type in the amendments you require. h to send any images/logo's with your alteration requests, we recommend you simply reply to the initial we sent, attaching any files. y, if you are happy with this design, please confirm online using the log-in link we sent you or simply send a reply stating "design " to [email protected] quoting your company name. te that if you do not advise us of any alterations within 14 days the design will be deemed to be correct and approved. Page 1/1 carpenters

9 Introduction Sean Egan Chairman, Rehab Group Welcome to the 10th edition of The Brain Injury Handbook. This free and comprehensive resource provides advice and information on acquired brain injury, and details on the support available in the United Kingdom. Whether it is you or a family member who has been affected, the Handbook aims to help you to learn more about brain injury and how to access the appropriate services. The Rehab Group is an independent international group of charities and public benefit companies which provides health and social care, education, training and employment, in the United Kingdom, Ireland, the Netherlands, Saudi Arabia and Poland. In the UK, the Rehab Group comprises four organisations Momentum, TBG Learning, Acorn Training and The Chaseley Trust each dedicated to assisting people in fulfilling their goals. Our bespoke services offer support to people with a wide range of disabilities, including those with acquired brain injury. Rehab has over 20 years experience in providing vocational rehabilitation services that support people with acquired brain injuries to return to employment, training and further education. Rehab has been at the forefront of acquired brain injury services since our first project opened in Glasgow in 1990 and recognises the effects of brain injury and understands the most effective ways they can be managed. The brain injury rehabilitation programmes that we offer are centred on providing coping strategies as well as the support to overcome the unique challenges a brain injury can present. Our specialised services offer comprehensive assessment, working towards dedicated employability training and job coaching. The Rehab Group is driven by its objective to change the lives of people for the better, helping them achieve their potential whatever the circumstance, not only through the services we deliver but also through the information and advice in The Brain Injury Handbook. As someone who has had their own personal experience of the effects of brain injury, I have accessed some of the excellent services that are highlighted in the Handbook and believe it is an excellent resource. I hope that you find this edition of The Brain Injury Handbook as helpful and informative as I have. The Brain Injury Handbook 7

10 Legal support to build your future After a brain injury, you know life will change; and you want to build a positive future. Our teams understand the uncertainties you face, and will work with you in a long term relationship. We guide you through the legal process to secure financial security for the future. Leigh Day has 25 years experience of helping brain injured clients to achieve the financial security needed to rebuild their lives. Our expert lawyers are dedicated to your case, committed to securing the best for you, and will always give you an honest assessment. You will have a free initial consultation; we visit you at home and in hospital; we can assist with housing adaptations and equipment and are always there to support you throughout your case and beyond [email protected]

11 A word from the Editor Jonathan Smallman Having first-hand experience of severe brain injury, I have, in my role as Editor of The Brain Injury Handbook, used the knowledge gained from my accident and its consequences be those short or long-term to reflect on brain injury from both a personal and professional perspective. 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. With that in mind, the Handbook is 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 the Handbook of interest and, I hope, find it of use. The information and advice provided in the Handbook 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 experiences. The Handbook is structured into sections so that you can easily access the information most relevant to you at any particular time. There is no doubting the level of trauma that a brain injury can inflict on a person, be that physically, mentally, emotionally, or as is common all three; however, the trauma experienced by a family can be of equal significance. A brain injury requires everyone involved to become 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 information in writing about brain injury to enable a clearer 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 at the very least provide a useful overview. In line with critical acclaim received from an increasing number of professionals in the field of brain injury, we hope that you will find this issue of The Brain Injury Handbook invaluable reading and a great source of help. The Brain Injury Handbook 9

12 Rehab in the UK and Ireland Rehab is an independent international group of charities and public benefit companies that work towards a world where every person has the opportunity to achieve their potential. Over 3,200 staff members provide high-quality health and social care, training and education, and rehabilitation, employment and commercial services in Ireland, England, Wales, Scotland, the Netherlands, Poland and the Middle East. The people who currently use Rehab s services include young people and adults with physical, sensory and intellectual disabilities, people with mental health difficulties, people with autism and people with an acquired brain injury. A range of essential services is also provided to older people, carers and others who are marginalised. Every year, thousands of people and their families benefit from the support provided by Rehab in more than 260 locations. For more information see From a network of 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 a 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. Momentum also provides social care and supported living services to people in their own homes. Momentum comprises Momentum Skills, Momentum Care and Haven. Momentum Skills offers rehabilitation and training services, empowering people to gain the skills and confidence to live independently and to fulfill 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. Its teams support people in their communities, enabling them to live independently and to take part in community-based activities. Haven is Momentum s social enterprise arm. Approximately 80 per cent of its employees 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 in Eastbourne. Chaseley Home offers residential respite/holiday care as well as rehabilitation programmes, in addition to day care and outpatient therapy services for nonresidents. It also runs a wheelchair-accessible gym called Activate. For more information, visit www. chaseley.org.uk. TBG Learning is a third sector owned organisation, and a growing provider of the DWP s Work Programme. As part of the Rehab Jobfit supply chain, TBG Learning offer unique customer focused employment preparation services, tailored to meet the individual needs of unemployed people across the UK. 10

13 Every year TBG Learning support hundreds of people, many from disadvantaged backgrounds such as long-term unemployed adults and young people not in education, employment or training, helping them with their journey towards getting and keeping a job. With centres in South West England and Wales, TBG Learning work closely with in communities, with Government organisations and local employers both large and small, building and maintaining networks that support people back in to work. For more information, visit Acorn Training Consultants are a youth and adult learning organisation providing services focused on employment preparation and helping people across the North East of the United Kingdom unlock their potential. With Centres throughout Derbyshire, Acorn Training offers a diverse range of support services aimed at supporting young people aged between via their youth Study Programmes, Traineeships and Apprenticeships, as well as delivering a range of Adult Skills and Community Work Placements. For more information, visit Rehab JobFit is a third sector led partnership of the Rehab Group and Interserve, which delivers training, support and employability services across the UK. 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, the Netherlands and Saudi Arabia 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 nongovernmental 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 nationally recognised training programmes, which are provided via centres, employers workplaces or by blended learning. In 2013, 90% of those who completed training with National Learning Network progressed to employment, or to further education and training. 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, providing employment opportunities for over 400 people, almost half of whom have a disability. 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. 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 that prevent equal opportunities. It participates actively in a number of international and European organisations, including the Economic and Social Council of the UN, where Rehab has consultative status as a nongovernmental organisation. The Brain Injury Handbook 11

14 Specialist ABI Outreach Team Homerton University Hospital Homerton Row London E9 6SR T: F: E: W: Specialist ABI Outreach Team Community rehabilitation for people with acquired brain injury We are a well-established interdisciplinary team providing specialist community based rehabilitation services for adults with non-progressive acquired brain injury. We achieve the highest quality practice in our adherence to national clinical and government guidelines, and are embedded within a complex specialised neuro-rehabilitation unit. Our approach is evidence-based and uniquely tailored to the client at any stage in their recovery after hospital. Services Offered Assessments and reports Treatment programmes Vocational rehabilitation Family support Professional consultation Brain injury education and (e.g. for clients, family, friends, carers, support workers and employers) Intervention Aims & Goal Setting We aim to focus on what the client wants, increasing participation, independence and well-being in a range of personal, social and vocational domains. Goal setting and treatment are collaborative and individualised, and we facilitate the involvement of key people and agencies for the client while remaining relevant, flexible and responsible in our work. Disciplines Available Clinical Neuropsychology Occupational Therapy Physiotherapy Speech & Language Therapy Rehabilitation Assistant Geographical Service Criteria We work with locally NHS funded and private clients living within 60 minutes drive of Homerton University Hospital. This includes clients registered with a GP in Barking & Dagenham, Enfield, Haringey, Havering, Redbridge, or Waltham Forest, and those with GPs in West, Southwest, or Southeast Essex. Referral Process Please contact us on the details above or download a referral form from our website.

15 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 either traumatic brain injury or non-traumatic brain injury. The most common causes of traumatic brain injury are road traffic accidents, assaults and falls. Non-traumatic brain injury has a variety of causes. The most common causes are: stroke and other problems within blood vessels supplying the brain; tumours; infections; poisoning through ingestion or inhalation of toxic substances; metabolic disorders such as liver and kidney disease; or diabetic coma and lack of blood flow (ischemia) or oxygen (hypoxia) to the brain. Acquired brain injury therefore excludes brain injury 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. 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. The Brain Injury Handbook 13

16 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 14

17 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 (see (Figure Figure 1) is 1) the is the largest part largest of part the brain of the and brain is the and area is the that area is that responsible is for for all all our of thinking our thinking activities. 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 controls visual spatial (non-verbal) functions such as those involved in drawing, rhythm or finding one s way in unfamiliar surroundings. The hemispheres are known to process material in different ways with the left cerebral hemisphere specialising in processing material in a sequential and logical manner and functions the right such cerebral as those hemisphere involved in processing drawing, rhythm or finding one s way in unfamiliar information in a holistic and intuitive way. surroundings. The hemispheres are known to The process cerebral material cortex in different is further ways, divided with into the four left areas, cerebral or lobes, hemisphere each of specialising which controls in processing specific functions material in and a sequential skills. and logical manner and the right cerebral hemisphere processing information in a holistic and intuitive way. The cerebral cortex is further divided into four areas, or lobes, each of which controls specific functions and skills (see Figure 2): Frontal Temporal Parietal Occipital The Brain Injury Handbook 15

18 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 16 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

19 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 (see Figure 1) 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 (see Figures 1 and 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 17

20 Specialist Brain Injury Compensation Solicitors in the North East Contact Kirsten Scott on Beecham Ad.indd 1 06/09/ :14

21 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 caused by 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 types of primary injury: (i) penetrating or open head injury and (ii) 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 type 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 19

22 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 may result in permanent disabilities. Secondary injury Unfortunately, a number of complications after the initial injury can cause secondary injury damage. 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. 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. 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. A person who remains unconscious for over 6 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 Table 1). 20

23 The brain injury itself Section 2 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: (i) Eye opening; (ii) Best motor response (physical movement; (iii) Verbal response. Each of these categories is scored from 1 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 any memory disorder caused by brain damage, disease or physical trauma. Post traumatic amnesia (PTA) is a specific type of amnesia in which the person, for a period after their traumatic brain injury and after they have regained consciousness, cannot form new memories. Despite this they will generally appear lucid and be able to engage in conversation and everyday activities. However their PTA means they will not be able to remember anything new to them, such as a conversation they had minutes ago or activities they did earlier that day. PTA is measured from the time of the brain injury to the recovery of continuous memory that is the accurate recall of new material on three consecutive days. In contrast, the individual is very often, but not always, completely able to remember information that was familiar to them before their brain injury. If those caring for the person with a brain injury do not understand the nature of PTA, they will typically be perplexed as to how the individual can accurately remember events and details from many years ago but not what they were told and what they did only moments earlier. After regaining consciousness following a traumatic brain injury, the individual may remain in a state of PTA for minutes, hours or days and, more rarely, weeks or months. It is important for those treating the person to establish how long PTA lasts. This is because PTA duration is a good predictor of the severity of the brain injury in that it has consistently been found that the longer the duration of PTA, the greater the likelihood the person will experience long term effects from the brain injury particularly cognitive problems, emotional difficulties and adverse changes in behaviour and personality. Table 1 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 21

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25 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% of most people of with their a severe physical brain difficulties injury overcome within the most first of their physical difficulties within the first year. year. Although physical difficulties can can present present problems, it is the cognitive difficulties and and personality changes changes that are that the are most the distressing, most distressing, as these have since a greater these impact have a on greater social, work impact and family on social, life. Remember, work and the family nature life. of brain injury is unique and not all of these problems will Remember, experienced the by nature everyone. of brain injury is unique and not all 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. 23 The The Brain Brain Injury Injury Handbook 23

26 Physical problems Physical problems usually result from localised damage either caused by 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 co-ordination 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 because of 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 upsetting, 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 is essential both inbetween activities and when feeling tired. 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. 24

27 The consequences of brain injury Section 3 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. 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. The Brain Injury Handbook 25

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29 The consequences of brain injury Section 3 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 caused by 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 5 minutes, or if such seizures follow each other in rapid succession, the person may be entering a life-threatening state known as status epilepticus and emergency medical help should be called. 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 anti-epileptic drugs. Although such drugs do not cure epilepsy, they do stop the seizures from occurring in up to 80% 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 1 year. The regulations are slightly different for driving a larger vehicle, such as a bus or a lorry. (See Section 7, p114, 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. The Brain Injury Handbook 27

30 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. 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 office window when you are working. 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. 28

31 The consequences of brain injury Section 3 Dividing attention Divided attention is the ability to split our attention between competing items of information. This 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 29

32 Memory Memory problems are, for many, a main area of difficulty. Short term memory and working memory problems are especially common after brain injury. In contrast, the ability to remember long-term memories formed before the brain injury is often well preserved, except sometimes after more severe brain injury. Short-term memory is the part of the memory system where information is temporarily stored for up to about 30 seconds. If information is to be retained for longer it must be consolidated into long-term memory. The capacity of short-term memory is very limited. In general people can only hold between five and nine pieces of information in short-term memory, with the average being seven pieces of information. Writing down a telephone number, as we are told it, is an example of a mental task reliant upon short-term memory. Working memory is related to short-term memory. It is the memory system which allows us to temporarily hold in mind and process multiple pieces of information. Working memory is therefore crucial to many other mental abilities such as reasoning, comprehension and problem solving. Mental arithmetic is a good example of an activity highly dependent upon working memory. Human memory is a complex phenomenon and there are various aspects of memory that may be impaired, to some degree, by brain injury. Some of the areas of memory that may be affected by brain injury are: Verbal (spoken or written information) Visual ( pictures, faces, designs and patterns) Episodic (past personal events and experiences) Semantic (meanings, concepts, factual information and general knowledge) Prospective (future events such as appointments, meetings and social/leisure activities) 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. 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. 30

33 The consequences of brain injury Section 3 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. 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, and 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. 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 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. 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 31

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36 Ideas and sources of support in overcoming problems with memory Dr Andrew Bateman of the Oliver Zangwill Centre in Cambridgeshire explains. All people experience memory slips from time-to-time. However it is a source of great frustration when people say oh yes, I forget things like that to someone who after brain injury is experiencing really great difficulties. The difference between normal forgetting and pathological difficulties with memory may be illustrated by the contrast between the consequence of the occasional late/ missed birthday card and serious adverse consequences of missing an appointment with a probation officer. Our lives are so entwined with memory and in fact when you stop to think about the term memory, it doesn t take long to notice that it is a term that refers to many different functions. It is a difficult term to talk about because of depictions in the popular media vary, perhaps from a Tom and Jerry cartoon where a bump on the head leaves Tom forgetting that he is a Cat to a movie where the hero wakes up in a hospital scene forgetting that he was married or achieved some other important plot-related goal. Less frequently depicted in movies is the type of memory, perhaps a bit more mundane, and known as prospective memory. As you awaken each day and think about what needs doing today, one sets in train plans or intentions for the day that you aim to achieve. You (might) intend to achieve a certain number of steps towards a bigger overall project in our house it might be lifting the washing out of the machine to hang up and dry and tackle a bit of the ironing pile. This neverending quest for tidiness might also include embedded goals such as recalling that I need a particular shirt for an outfit I want to wear on my Friday Night Out! Holding these things in mind can be very challenging. 34

37 The consequences of brain injury Section 3 At the Oliver Zangwill Centre for Neuropsychological Rehabilitation it is this type of memory problem that we have noticed causes great difficulty. A very long programme of research has been led by the Centre s Founder - now-retired but still very active - Professor Barbara Wilson. In the 1990s she pioneered the use of radiopagers to remind people of their planned schedules. The research she did sought to demonstrate that a structured set of reminders can help people achieve their daily intentions. This was found to be the case and a nationallyavailable service was established, that to this day has a small number of people around the UK who require extra support of what is known as the Neuropage Service. More recently as technology has moved on, the service has evolved to be able to send messages to mobile phones (as sms text messages). The key thing about this service is that a clinician or administrator is on hand to help programme a week/month or year s worth of regular messages that are sent automatically to the service user s phone at the correct moment. Examples of messages vary from reminders to eat and drink, to the one-off or annual reminders that it s time to choose a birthday card and buy a stamp for Great Aunt Florrie. Interesting recent research has further investigated whether the content of the message really matters. Sometimes a simple buzzer or alert is sufficient to remind an individual of their goals or plans for the day. We have recently analysed the messages sent to very long term users of the NeuroPage service and found that they were less likely to have sustained a TBI (more likely other forms of acquired brain injury) and more likely to need reminders about finances. So the key steps in achieving success despite memory problems seem to me clear: first of all recognising what type of memory problem we are dealing with; second thinking through what strategy might help overcome this; and third using the strategy, with moments to reflect on whether the plan has been successful. Some of memory rehabilitation can seem on the face of it, rather prosaic! However, planning to leave things by the front door, setting countdown timers (e.g. to put the ice-cream back in the freezer before it fully defrosts) or using a whiteboard to record the family plans for the week are all typical low-cost interventions that can make living with memory difficulties that little bit easier. A review of day to day memory problems is sometimes worth seeking advice from a neuropsychologist, Occupational Therapist or Assistive Technologist. I have been especially excited by more recent technological advances, in particular to provide support for recall of autobiographical details. Some people when they come home from a day out have great difficulty talking about their day (whether due to dysphasia or amnesia). Simply using a smart phone to take snaps through the day is a very cheap way of creating a log that can be good conversation starter. If this seems too demanding, there are at least two new wearable camera devices being promoted one is known as the Autographer (another is the Narrative Clip). These fall into the category of life logging technologies, with other examples being activity recording devices that are used by runners to analyse the distances and routes they have run. We have found the Autographer to be an interesting device because it is loaded with sensors that trigger it to take a picture of a scene in response The Brain Injury Handbook 35

38 to changes in heat, light, movement. The user can upload a flick-book movie of the day experienced and then later enjoy reliving their day with their conversation partner. For some users this has felt like wearing a black box recorder a back up in the case of failure. Emerging research with this device has shown that reviewing the images may in fact enable consolidation of memories. In our own research group we have also seen benefits of wearing the device to support engagement in psychological therapy. Increasingly the android and ipad APPS market is becoming the turn-to source of software for use with a smart phone or tablet PC. The bewildering choices make it hard to know what is most helpful. There are however some very useful web resources. In particular some Neuropsychologists have created lists and reviews of programmes. Indeed recalling what you have found on the internet can also be difficult. One programme that I have found to be very useful is called Scoop.It. This site provides a way of curating themed webpages, in someways this is like making a bookmark in public. Using this website, I have posted a few links to things mentioned here on a scoop.it page. I hope you find them useful! 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 things such as keys, wallet, diary, medications, 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. 36

39 St St George George Healthcare Healthcare Group Group is is the the UK s UK s leading leading provider provider of of Specialist Specialist Care Care and and Rehabilitation Rehabilitation Services Services providing providing the the highest highest possible possible quality quality of of patient patient centred centred care care that that respects respects the the rights rights for for dignity, dignity, privacy privacy and and individuality. individuality. St. St. Mary s Mary s Hospital Hospital Specialist Specialist Provider Provider of of Forensic Forensic Mental Mental Heath Heath and and Offender Offender Health Health Rehabilitation Rehabilitation Services: Services: Brain Brain Injury Injury Neurodegenerative Neurodegenerative Disorders Disorders including including Huntington s Huntington s Disease Disease Autistic Autistic Spectrum Spectrum Conditions Conditions Therapies Therapies include: include: Adapted Adapted Offender Offender Treatment Treatment Programmes Programmes Aggressive Aggressive and and Challenging Challenging Behaviour Behaviour Management Management Programmes Programmes Domestic Domestic and and Community Community Living Living Skills Skills Functional Functional Literacy Literacy Numeracy Numeracy and and ICT ICT Skills Skills Occupational Occupational Therapy Therapy Substance Substance Misuse Misuse Awareness Awareness Social Social Skills Skills and and Vocational Vocational Skills Skills Services Services include: include: Medium Medium Secure Secure - Brain Brain Injury Injury Low Low Secure Secure - Brain Brain Injury Injury Locked Locked Rehabilitation Rehabilitation - Brain Brain Injury Injury Locked Locked Rehabilitation Rehabilitation - ASC ASC St. St. Mary s Mary s Hospital Hospital Floyd Floyd Drive Drive Warrington, Warrington, WA2 WA2 8DB 8DB Tel: Tel: Fax: Fax: [email protected] [email protected] [email protected] [email protected] St. St. Cyril s Cyril s Rehabilitation Rehabilitation Unit Unit Services Services include: include: A Specialist Specialist Provider Provider of of Rehabilitation Rehabilitation Services: Services: Brain Brain Injury Injury Challenging Challenging Behaviour Behaviour Service Service Brain Brain Injury Injury Low Low Awareness Awareness - SMART SMART Assessment Assessment Neurodegenerative Neurodegenerative Disorders Disorders including including Huntington s Huntington s Disease Disease Hydrotherapy Hydrotherapy Service Service Stroke Stroke Neurorehabilitation Neurorehabilitation Spinal Spinal Injury Injury Tracheostomy Tracheostomy Care Care Therapies Therapies include: include: St. St. Cyril s Cyril s Rehabilitation Rehabilitation Unit Unit Aggressive Aggressive and and Challenging Challenging Behaviour Behaviour Management Management Programmes Programmes Countess Countess of of Chester Chester Health Health Park Park Hydrotherapy Hydrotherapy - Inpatient Inpatient and and Outpatient Outpatient Services Services Liverpool Liverpool Road, Road, Chester Chester CH2 CH2 1HJ 1HJ Sensory Sensory Modality Modality Assessment Assessment and and Rehabilitation Rehabilitation Technique Technique (SMART) (SMART) Tel: Tel: Spasticity Spasticity Management Management Fax: Fax: [email protected] [email protected] [email protected] [email protected] For all referral enquiries please call our dedicated referrals phone number:

40 Executive skills Executive skills involve reasoning, planning, problem-solving and organising. 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 then 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. 38

41 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, p66 for an account by Camilla Barber.) 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 39

42 At home with care The Home Care Specialists Supporting those living with a Brain Injury Helping Hands has been providing award winning quality live-in support since A family run company we apply our local knowledge and 25 years of experience to offer you one to one support that enables you or your loved one to remain at home with compassion and dignity. We understand that each condition and individual is completely different, needing a unique approach for all. Our Live in Carers focus on enhanced re-enablement, independence, choice, dignity and respect and can provide support at home, work, college or university. We are able to balance independent living with creative personalised bespoke care needs by assisting with: Personal care and individual support needs Complex nursing led care Companionship Social Activities Housekeeping Mobility Social Activities To find out how we can help you, call: or visit: _Pancake Race Ad_Layout 1 06/01/ :36 Page 1 With Motability we can attend Joshua s hospital appointments, without having to worry how we will get there. Victoria, Joshua s mum What difference could the Motability Scheme make to you? You can use your mobility allowance to lease a car, scooter or powered wheelchair. What s included on the Motability Scheme: Insurance Servicing and repairs Tyres Breakdown cover freephone or visit motability.co.uk for further details National Presence: Local Understanding For specialist advice on all personal injury and clinical negligence claims, speak to one of the UK s leading law firms. For a no obligation consultation with us please contact Jane Goulding Jane Goulding [email protected] Birmingham Derby Leeds Leicester London Manchester Milton Keynes Nottingham Oxford Sheffield Stoke on Trent Who cares wins...

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44 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 often 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. 42

45 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 43

46 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 because 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 depressive or 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. 44

47 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 those close to them may turn away. 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. 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. The Brain Injury Handbook 45

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50 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. 48

51 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 because of their 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, p109 for useful contacts.) 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 49

52 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 as that 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. 50

53 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 caused by 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 51

54 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, although these 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 as 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 52

55 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 because the burden of care can sometimes be considerable Be aware of the resources available to you (see Section 7) (See Section 7, p109 for useful contacts.) The Brain Injury Handbook 53

56 A better quality of life Clinical Negligence Irwin Mitchell LLP is authorised and regulated by the Solicitors Regulation Authority. Brain Injury Legal Advice from Irwin Mitchell Compensation is only part of the story as brain injuries have a dramatic and lifechanging impact not only for the person injured but also for those who are close to them. Freephone: Personal Injury At the Richardson Partnership for Care we offer specialist residential care and rehabilitation for adults with acquired brain injuries. We focus on providing: A place that feels like home Care packages to meet the needs of each individual Successful rehabilitation Regular clinical assessments Opportunities for social inclusion Regular supported home visits Our multi-disciplinary team provides specialist rehabilitation and support for even the most challenging individuals. Call us on to see how we can help your loved ones. The Richardson Mews, Kingsland Gardens, Northampton NN2 7BH PLS-PI146-AD-Brain Injury Legal Advice 85x120.indd 1 24/07/ :27 RPC Advert - Brain Injury Handbook Q/P.indd 1 8/10/14 13:43:44

57 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 6 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 2 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 2 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. We hear 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 55

58 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, thus 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. 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, p109 for the programmes offered.) 56

59 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 - and 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 57

60 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. 58

61 Brain and Spinal Injuries: A Legal Perspective By Jane Woodcock, Senior Legal Executive Why counselling and rehabilitation are key to supporting brain injury victims WHEN someone suffers a serious head or brain injury, it can have a devastating impact on their day to day life for their rest of their life. And in difficult times such as this, they need not only expert legal advice, but also access to crucial rehabilitation services and counselling to help them take the first steps towards rebuilding their lives. For scaffolder Matthew Burke, of Hull, winning the battle in his mind proved tougher than getting back on his feet. Aged 28, he fell from step-ladders at work and was left scarred for life on his head. He was initially unable to walk, and found himself recovering alone at home, out of work. Whilst he had the courage and fight to quickly overcome his physical battle, mentally, it proved particularly tough adapting to the changes in his life. At first I didn t want to go out at all, he said. I lost my confidence and worried about many things, from my physical appearance to physical ability. There were some dark days where I felt down, and I admit that I felt isolated. I had lost my job, I couldn t drive, I had split with my partner and was not able to see my friends, whilst also not knowing what the future held health wise. It was during these days that the support of his legal team at Neil Hudgell Solicitors who secured him a six-figure compensation settlement - played a huge part in getting his life back on track. I had great counselling support and it was absolutely crucial to my recovery It always helped lift my spirits, kept me positive and gave me some focus to where I was heading. It made me feel calmer and more relaxed, and focus on the end goal. My solicitor was always there for me and ensured I was getting the treatment and support I needed at all times. Introducing Matthew Burke - on recovering from a brain injury - Winning the battle in his mind proved tougher than getting on his feet. Jane Woodcock, Senior Legal Executive and member of the Law Society s Personal Injury panel, who specialises in serious injury and complex claims and represented Matthew, said: Matthew s story highlights just how important constant support and counselling is for people suffering from brain injuries. More importantly, it is an example of how that support can help people put their lives back together and start moving forward again. We emphasise the importance of taking a rehabilitation driven approach to all brain and injury cases, recognising that the life-long challenges facing all those touched by the injury are ones that money can seldom cure. For a confidential consultation with an expert call:

62 The physiotherapist Never Gunje joined the team at The Chaseley Trust in As the psychology social care and therapy manager he talks about his role with the expanding therapy department. As part of the Rehab Group, The Chaseley Trust has a vibrant Therapy Department providing specialist services for adults with severe and complex physical disabilities, including those with brain injury and progressive neurological conditions such as multiple sclerosis. The aims of our physiotherapy interventions are to 1) promote each person s optimal level of function, 2) prevent and/or control secondary complications associated with long-term physical conditions, and 3) improve quality of life. Our services can be accessed by Chaseley residents as well as by those living in the community on outpatient basis. Therapy staff at Chaseley have excellent knowledge of posture and movement and their implications on functional ability. This provides the basis for the specialised individuallytailored therapy interventions provided to each person which include complex postural and seating assessments, splinting, functional electrical stimulation, and a variety of gym programmes. The gym programmes may include cycling using power-assisted disabled accessible exercise bikes, supported standing, and gym exercises using gym equipment adapted for wheelchair users e.g. crosstrainers, multi-gym, etc. Secondary complications, such as pressure ulcers, muscle stiffness, joint contractures and deformities, urinary tract and respiratory complications are common and often inevitable in people with complex neurological disabilities. Therefore, it is essential that physiotherapy management also includes strategies to prevent and control secondary complications. For example periods of prolonged standing and prone lying help to 60

63 Recovery and rehabilitation Section 4 maintain soft tissue length and control muscle spasms which is important for function. Uncontrolled positioning in bed and wheelchair can cause contractures and unsightly deformities which may in turn lead to pressure ulcers, pain and discomfort. The use of posture supports such as T-rolls and specialised sleep systems can be effective in the control and maintenance of posture in bed and can play a valuable role in the maintenance of joint range of movement critical for physical function. Many people with complex and severe physical disabilities require seating, which can vary from accessories to customised moulded seating. Expert knowledge of posture, joint range and function is required to ensure the appropriate prescription of a seating system. Additionally, ongoing physiotherapy intervention is essential in order to maintain quality of life for people with complex and severe physical disabilities. Furthermore, in the last few years, The Chaseley Trust has developed a gym accessible to disabled people including wheelchair users. The Activate Gym offers tailor-made packages of exercises to suit individual requirements and is the only gym of its kind in the area. Rowena, a regular user of Activate Gym says, Exercising weekly at Activate has enabled me to maintain my upper body strength and keep me fit. Activate s lead gym instructor, David, understands my requirements and offers support with my exercise programme. The gym equipment is specifically designed for wheelchair users and those with restricted mobility. I can highly recommend it. The importance of therapy interventions cannot be emphasised enough. Without therapy interventions, optimal level of functioning, good health and general wellbeing may not be achieved for people with physical disabilities. The Brain Injury Handbook 61

64 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 with the individual, and observing them 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 many and varied everyday problems that may be experienced by those who have had a brain injury and what can be done to help. 62 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.

65 Tel: (+44) Web: Specialist care homes designed around the individual to enable the best quality of life. Oak Court Oak Court is a purpose built care home situated in Taverham, Norfolk that provides en-suite accommodation for 18 residents with Neurological conditions. The home is designed for individuals with a Physical Disability or Neurological conditions. For more information please contact: Sophie Sellwood Office Manager Tel [email protected] 321 Fakenham Road, Taverham, Norwich NR8 6LF 13676_Rehab_120mmx177mm half page Ad_Oak Court AW.indd 1 9/4/14 4:00 PM

66 The occupational therapist Pam Foreman is a neuro occupational therapist specialising in the rehabilitation of adults who have neurological conditions, including brain injury. Pam works at Anglia Case Management and has responsibility for its Community Rehabilitation Service. Here she explains the role of the Occupational Therapist in assisting people in their local communities. In 2007 I set up the Community Rehabilitation Service (CRS) for Anglia Case Management. The service works with individuals who have sustained a brain injury, helping them achieve a greater level of independence at home, in the local community or in the workplace. The service s neuro occupational therapists (OT) work with individuals in their own environments. Assessing people in their own environment allows the OT to gain a realistic understanding of the challenges faced, therefore enabling them to work with the individual to find practical solutions. In addition, working with an individual in their home and community allows crucial interaction with family and others closest to them. Involving family in the rehabilitation process has many benefits, including helping the individual to identify goals, guiding the OT s intervention so that it works in harmony with the home environment, and teaching family members about strategies, techniques and modifications to ensure they can support the individual outside the therapy sessions. Working with families also allows the OT an opportunity to share information about brain injury that will assist them in supporting their relative in integrating back into the community. Children and adults nowadays are growing up surrounded by off the shelf technology such as tablets and smartphones and are familiar using them as part of their daily life. There is a wide range of assistive technology now available to clients for rehabilitation. Therefore it is becoming increasingly important for occupational therapists to use technology to enable their clients to increase their independence and as a result, live improved lives. 64

67 Recovery and rehabilitation Section 4 John s story Below is an example of how one client has been assisted by his occupational therapist to integrate emerging technologies into his life to improve his participation in meaningful activities and promote his independence. John was involved in a car accident in 2010 and sustained a major brain injury. He lives in his own accommodation with a day time support team as he continues to have memory difficulties, reduced attention and difficulties planning, problem solving and initiating activities. A referral was made to the Community Rehab Service by his Case Manager, requesting an assessment and prescription for suitable assistive technology for cognition (ATC) devices. An initial assessment was conducted with John with the aim being to identify the cognitive functions and activity domains that needed to be supported by a device. A demonstration tablet was taken to show him some of the potentially useful functions and applications and assess his acceptance and ability to use it. John demonstrated an intuitive ability to use the demonstration tablet and coped well with the touch screen. He appeared motivated to use such a device as he viewed it as socially acceptable. Following the assessment the OT felt that his needs could be met by a mainstream tablet device. She recommended a variety of applications that could be downloaded onto a tablet specifically designed to help compensate for his cognitive impairments and thus increase his independence in everyday activities. She felt the tablet could support his cognition in the following ways: 1. Alerts to redirect his attention back to a task. 2. Reminders to perform tasks at a given time. 3. Storage and display of information to aid memory retrieval. 4. Navigation assistance to increase access and safety in the community. Once the tablet had been purchased the OT supported John to download applications to support various cognitive functions and activity domains. She then taught him how to use and incorporate the applications into daily activities. She requested that an individual in John s care team become his technology partner to provide long term support to John in using the device, to help him develop routines around the use of the device and to gradually transfer the current pen and paper external aids he was using, onto similar tablet applications and functions. John recently wished to achieve a goal of independent travel to London to visit a friend. In conjunction with the tech partner and the OT, John practised how to use travel applications (apps) to plan his train journey, check platforms or re arrange the journey if unexpected problems arose. He practised using the maps function to help with navigation from the station to the address destination and restaurant apps were searched to find places to eat. A photo file was devised where screen shot photos were saved of useful pages found on the internet, for example, a map of the London Underground, in case these were needed for reference. After a supervised trip to London using the tablet with his tech partner, he has recently successfully completed the same journey independently. John s tech partner will provide long term support to him to ensure the tablet continues to be incorporated into daily activities to maximise his independence. The OT will review the assistive technology to ensure it continues to meet John s changing needs. The Brain Injury Handbook 65

68 66 The speech and language therapist Camilla Barber is the lead Speech and Language Therapist working in the Wandsworth Community Neuro Team, which is part of St George s NHS Healthcare Trust. Camilla works with people with communication impairments resulting from acquired and progressive neurological conditions. Here Camilla writes about the role of the Speech and Language Therapist working with someone with a brain injury and the challenges a person with a brain injury may face in relation to their communication and swallowing. Speech and Language Therapists work in acute hospitals, inpatient rehabilitation and community settings. Speech and Language Therapists work closely with Physiotherapists, Occupational Therapists and Psychologists to provide rehabilitation following a brain injury. There are a number of ways that speech, language and swallowing can be affected in someone with a brain injury. They include: Dysarthria this is a motor speech disorder which can result in imprecise articulation (slurred speech), poor breath support for speech, and variation in pitch, rate of speech or resonance. Aphasia/Dysphasia this is language disorder that typically results from damage to the left side of the brain. It can cause difficulties with a person s speech and often a person will struggle to think of the words they want to say or say the wrong word. Difficulties can also arise with understanding auditory and written language and with spelling and using numbers. Apraxia of speech this is a difficulty co-ordinating the muscles involved in speech and typically results in a person groping for the right sounds to form a word. Cognitive communication problems this can result in a person being impulsive, misreading other people s verbal and nonverbal communication, and changes in sense of humour. Dysphagia swallowing difficulties. The brain injury can also lead to a weakness in the muscles involved in swallowing. This can result in difficulties chewing and swallowing food, or food or drink going into the airway and potentially causing a chest infection.

69 Recovery and rehabilitation Section 4 The role of the Speech and Language Therapist Provides information alongside other members of the multidisciplinary team about what has happened and what is likely to happen to a person following a brain injury. Assesses a person s communication and works initially on rehabilitation goals focusing on maximising the person s communication skills at an impairment level this might include exercises to strengthen muscles or tasks to help find words more easily. Maximises the person s competence and confidence in their everyday communication abilities. In partnership with the person who has had a brain injury will support the family, friends or work colleagues of the person with a brain injury in better understanding how they can alter their communication style to make conversations easier for the person with a brain injury. Works with the person with a brain injury and their family looking at changes to the role of the person with a brain injury in their everyday life (e.g. as a mother, a friend) as a result of the communication difficulties and works at re-establishing a meaningful role within the family/social groups. At later stages of the rehabilitation process works closely with the Occupational Therapist and Psychologist at helping the person who has had a brain injury to return to meaningful activities of daily living such as returning to work or volunteering. Supports the person and their family in discussing how people feel since the brain injury occurred. If appropriate may encourage the person who has had a brain injury to attend local support groups run by charities like Connect, Headway or the Stroke Association. This provides an opportunity for the person with a brain injury and their family to meet other people who have lived with a similar condition in their local community who can offer unique insights and support to the person and their family. In some circumstances may recommend that a person would benefit from using low or high tech alternative and augmentative (AAC) devices to support conversations. For example, using alphabet charts or computer based devices like i-pads. The Brain Injury Handbook 67

70 What helps communication? Top ten tips on communicating with someone who has a brain injury: 1. Reduce background noise. 2. Ensure you face the person you are speaking to avoid talking in different rooms. 3. Take your time don t rush conversations. A person with communication difficulties benefits from extra time to understand and respond to your questions. 4. Be honest, don t pretend you understand tell a person and ask them to clarify what they mean. 5. Have a pen and paper handy, as some people can read or write better than they can speak. Sometimes drawing the message or using other props (pictures, photographs and real objects) can help. 6. Make it clear when you are changing topic. 7. For people with difficulties understanding language try and keep your sentences short and only give one piece of information at a time. Try to avoid difficult/complicated words use common, everyday words instead. 8. If you are not sure what a person is saying use closed questions to clarify the conversation. e.g. Do you mean you want a cup of tea? 9. Speak slowly and clearly. If the person with a brain injury has dysarthria or dsypraxia encouraging them to speak slowly and clearly will make their speech easier for you to understand. 10. Avoid shouting, interrupting, patronising or ignoring the person with communication difficulties. Many people with communication difficulties have had the experience of being treated as stupid, drunk or mad, which makes living with a language impairment even harder to deal with. In relation to swallowing difficulties, the Speech and Language Therapist: Assesses why the muscles in the mouth and throat are causing problems. Tries strategies to make eating and drinking easier and checks for improvements. May refer a person for an instrumental assessment of swallowing (e.g. a videofluoroscopy). Makes suggestions about changing what is eaten and how it is eaten. Talks to the person about the effects of their altered eating on their everyday activities. You can be referred to your local Speech and Language Therapist via your GP. Connect: or Headway: or The Stroke Association: or

71 Independent Provider of Specialist Neurological Rehabilitation Services Hobbs Rehabilitation provides a patient- centred neuro rehabilitation service across the South of England, offering high quality therapy enabling individuals to reach their full potential. For more information about Hobbs Rehabilitation, please visit our website Or call us Call Jon Nicholson on or visit When you need a solicitor who will see you as an individual Anthony Gold specialises in helping those who ve been wrongfully braininjured to claim compensation. Our partners are experts in this field. We respect our clients individuality; they value ours because it s focused on winning their cause. We ll come to see you wherever you need at home, at hospital or at one of our three London locations. We will fully explain how your case can be funded, being transparent from the outset.

72 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: Transition from hospital to home at an early stage of the discharge process 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 70

73 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, exploring funding options, 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. A key role of case management is to explore funding options available to the person with the injury and their family. 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 and have experience of working in rehabilitation and/or case management. 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 71

74 Alternative Therapies - Did you think about these? The use of complementary and alternative medicine in recovery and rehabilitation after brain injury. As a member of the care team at The Chaseley Trust (part of Rehab Group in the UK), Serwiusz Filipowski highlights benefits of alternative therapies that can be used as part of a care plan, in conjunction with more traditional care regimes. I am sure you know that it is curtail to get as much help and support in the first 24 months to gain the best result in recovery. The whole team of health care providers work together to help you get better as soon as possible. The work they do is fantastic buy why not get even more help? Think outside the box! Did you know that Prince Charles established the charity The Foundation for Integrated Health in 1993 to explore how safe, proven complementary therapies can work in conjunction with mainstream medicine. I too strongly believe that when you combine conventional and alternative medicine you can get the best help you need! I am not going to write here about miraculous healings, when people with no hope from traditional medicine, experienced unbelievable recovery. Although there are examples of miracles, I simply can t to promise you anything like this. What I want to say is this, I strongly believe, alternative therapies have their place in the health care system, may speed up the recovery process and make it less stressful for you and your family. Yes, your family too! Do not think only about yourself. Usually the hole family needs a lot of support, energy and harmony to go through all the challenges. Many holistic therapies help bring more balance, harmony, relaxation which is so much needed. I would like you to know that you have plenty of options. Here I will talk only about several of them, I am well familiar with. There is a myriad of different therapies and you should chose whatever you resonate with. If you think that you have no money for anything else then conventional treatments, think again. Good news is that some treatments are totally free or almost free. 72

75 Recovery and rehabilitation Section 4 Reflexology Reflexology is system of massage of feet and hands based on the idea that there are invisible zones running vertically through the body (meridians), so that each organ has a corresponding location in the foot/hand. By massaging specific reflexes you can stimulate healing in specific organs or systems. It is so simple that anyone can do it. Google: reflexology foot chart, hand chart, and you can start treat yourself right away. You can even do it to yourself while watching TV, just learn which reflexes on hand to stimulate. I know how difficult is to find somebody to massage your feet so I suggest, start with hands! MAP (Medical Assistance Program) I have encountered MAP when I was looking for information on how I can use Nature to bring more health and wellbeing in my family s life. MAP (Medical Assistance Program) created by Perelandra in USA is the result of seven years of unconventional research. The program is easy to use for anyone who can lie down undisturbed for 40 minutes and talk about his health problems with his healing team. MAP does require a leap of faith. You are connecting with nature spirits and your higher self. Great news - it is free. The only things that are required to do this healing program are the book (less then 10) and 40 minutes of free time every week. Essences Personally I feel that Flower Essences are perfect for any injury of nervous systems. These are oral solutions that are taken to balance, stabilize and repair the body s electric system and its circuits during times of illness, injury and stress. They also are taken for maintaining the overall strength and balance in the human electric system. Basically essences repair broken circuits in your body, having brain injury you probably need a lot of circuits to fix! Reiki Reiki is invaluable tool for you and whole family. Reiki has originated from Japan and is energy healing system, which helps also with stress reduction and relaxation. It is administered by laying on hands and is based on the idea that an unseen life force energy- Ki (Chinese -Chi) flows through us, heal us and makes us alive. Look at it not just as a healing tool, but a way to bring more balance, relax and harmony in your whole family. To start using Reiki you will need to be initiated by a master who will open your channels for this healing energy. It is a lifetime investment of less than 100. In my opinion well worth it! I have been using Reiki for 17 years and I admit it is very enjoyable and relaxing experience. Reconnective Healing Reconnective Healing is, one of the latest developments in energy healing. The practitioner sends not only energy, but also light and information. It is so mind blowing that Dr Eric Pearl, who originated it, is being invited to do presentations in medical clinics and universities all over the world. There is also growing scientific research of it by several open minded scientist. These are just a few alternative therapies I wanted to share with you. There is a lot more of them out there. Choose what resonates with you most. Do not forget that you are not just physical machine, you have body, mind and spirit. To experience health and healing you need to address issues on many levels not only physical. Good luck with your recovery! The Brain Injury Handbook 73

76 3 CHEERS FOR 3L CARE! We are extremely proud to announce that our home at Chapel Road, Winsford is now an officially accredited Headway UK Care Provider! We are a (not for profit) Nursing Home offering Residential Care, Respite & Short Breaks to people aged over 16 years with an Acquired Brain Injury & Complex Health Needs. Our focus is on providing high levels of Nursing Care to adults who require Tracheostomy Care, Gastrostomy Care, Oxygen Therapy, Seizure Management & Cough Assist therapy. With only 9 bedrooms, we purposely keep things to a small scale so that our staff spend more time with each person, ensuring that whilst we are giving the highest quality care, we still focus on having fun, enjoyment, activities and excitement! As one of just six other accredited Headway UK providers in the North West, you have complete assurance that we deliver highly specialised Residential & Respite Care to all people affected by brain injury. Contact Veronica, our Family Liaison Manager, on who will help you from the very beginning. [email protected] 3L Care CIC, Chapel Road, Winsford, Cheshire, CW7 3AD Eagle Wood Neurological Care Centre exemplifies quality in the care sector. Sir Tony Robinson Eagle Wood is an award winning, purpose built residential care centre in Peterborough. It has five neurological care units. Each unit provides a distinct care model catering for different aspects of neurological nursing needs; including long term neurological conditions, neuro-rehabilitation for people with acquired brain injuries (including strokes), frontal temporal dementias, learning disabilities and complex care. Its exceptional and well thought out facilities include large ensuite bedrooms, a hydrotherapy pool, a skills kitchen, therapy room, gym and a complimentary coffee bar for residents and their families. Please contact us on: or [email protected]

77 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, p109 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 75

78 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 a 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 in 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. 76

79 Returning to work after a brain injury Section 5 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, p109 for information on Momentum s vocational rehabilitation programmes.) 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. 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 caused by 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 77

80 Meet Helen... As a brain injury survivor, Erick Mason told of his experiences in a previous Brain Injury Handbook. The immense changes brought on by brain injury affect more than just the injured person themselves. Erick Mason s wife, Helen, talks about his brain injury from her perspective. Erick and I had been married for 8 years when he suffered his brain injury. On the day of the accident our children had been to the caravan with their grandparents and arrived home about six o clock that evening. Moments later I received a phone-call saying that Erick had come off his motorbike and broken his arm. Our daughter Samantha was 16, Emily was 10 and Adam 6, and none of us felt any panic at the news of their dad s accident. He d come off his motorbike and broken his arm could have been worse. However, before I left for the hospital I got a phone-call from a policeman. The tone of his voice suggested that Erick had suffered more than just a broken arm. When I arrived at hospital Erick was in the A+E Department, lying in a bed covered by a blanket. He didn t look to be that injured. Apart from the obvious pain from his broken arm, he seemed to be OK. However, as I was standing by his bed I noticed his eyes began to role. Although I had no idea about what injuries he d suffered, it was obvious that something pretty serious had happened. Knowing nothing about head injury, let alone about brain injury, left me feeling very isolated. 78 Nobody seemed able to give me any answers and I felt totally powerless. When it came to Erick s discharge from hospital, the impact that his condition had on our home environment was nothing short of horrendous. He talks about his feeling of near nervous breakdown due to the consequences and confusion of his brain injury and we all had immense changes to face. Erick went through a total character change which was to prove a real strain on relationships in the family. He was bad tempered and aggressive and to be honest, it felt like I was like looking after a young child again. Beyond trying to cope with his emotional changes came the harsh necessity of surviving financially with three dependent children, as well as now a husband to look after. Erick has always been a very proud man. In his job he had been a wonderful communicator, spending a lot of time away from home training and assessing employees for his employer, Kwik Fit. He always knew how to

81 Returning to work after a brain injury Section 5 get the best out of people and enjoyed that responsibility. But we were now somewhere very different. Our roles had reversed. The responsibility of paying the mortgage now fell on my shoulders, so for me to retain a full-time job was crucial. Besides, Erick had spoken of his extreme tiredness and even falling a sleep on-the-job. We both realised that things couldn t go on as they were. When it came to changes in his and my relationship, they could be summed up with two words - communication difficulties. I had to become head of the house, the organiser, the one making day-to-day decisions, and Erick couldn t accept that. Call it male ego or call it pride but handing over the reigns to me would never be easy for him. And his relationship with our children proved to have its own issues. One of our children was having a lot of medical difficulties at the time, so quite apart from the impact of their dad being a changed man, was the fact that I had more than one person to focus on. None of us had ever been through experiences and challenges like the ones we now faced. We could find no support for Erick and the changes he faced, or for his family and the changes we faced. We didn t know where to go, who to speak to or who to get some answers from. Erick s continued outbursts of aggression led to us visiting our doctor, and we were directed to the Northumberland Head Injuries Unit. Maybe, finally, we were making some kind of progress in understanding Erick s condition and what he, I and our children were going through. The head injuries unit recommended us to Momentum Skills. At Momentum Skills people understood. Erick attended their rehabilitation programme and it was fabulous for us. It meant that he could be himself and find comfort from being surrounded by other people with brain injuries. It also meant that I as a family member who was experiencing brain injury from a different perspective, found the time to attend monthly counselling sessions with Momentum s Clinical Psychologist, Alistair Berry. For Erick, the rehabilitation programme saved his life and it s fantastic how much he values his role as the Client Representative. It s a role that was made for him in many ways. Having formerly been in a job that required the understanding and management of people, this role requires the same skills, plus it has the benefit of it being connected to people who Erick feels at one with, who he can understand from a unique perspective. Here s hoping that the role of Client Representative can become a paid one! What is the future for me? Well, because I ve had the experiences of bringing up a child with a disability combined with a husband with a brain injury, I am currently looking into changing my career path and studying to become an occupational therapist. 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 job retention support. For further information, visit The Brain Injury Handbook 79

82 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 in returning to their pre-injury occupation because, 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. 80

83 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. is therefore an essential part of the task of 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 The Brain Injury Handbook 81

84 Meet Keeley... At just 21 years old, Keeley Parkes was living life to the full in Tenerife where she worked as a holiday rep. But a disastrous accident left her life hanging in the balance. In 2004 I fell through a skylight and landed head first on a solid surface. I was rushed to hospital and my family were flown out to be by my side. I d suffered a brain injury and shattered both my wrists. Two weeks later my condition stabilised and I was flown back to a UK hospital. As the days passed, I became more aware of my brain injury and its effects which included not being able to walk, and having short term memory problems and poor speech. I attended regular physiotherapy until I could walk again and was finally discharged on my twenty-second birthday. My home life was re-arranged to suit my needs: my bed was brought downstairs and my parents had to care for me full-time. As time went on my dad would take me out for short walks but I was embarrassed and ashamed because I still had a terrible limp and couldn t speak properly. 82 I found it hard to come to terms with what had happened to me and my confidence and self-esteem were at rock bottom. I stayed at home all day, every day. It was also hard for my family. My brain injury was affecting us all and we didn t know how to cope. I was determined to get my life back to normal. My speech and language therapist referred me to Momentum Skills. During my initial meeting with them I was nervous it

85 The consequences of brain injury Section 3 felt like I was starting school again. But when I met my group a few weeks later and realised everyone was in a similar situation, I felt not alone anymore. I attended the vocational rehabilitation programme four days a week, taking part in social skills sessions and learning strategies to aid my memory loss, stress and anxiety. And I even gained a recognised qualification in using computers. As well as the group sessions, I had oneto-one meetings with a psychologist who helped me to understand and overcome my daily struggles. I also took part in workshops in CV building and interview techniques. I was assigned one of Momentum s job coaches who helped me to choose three areas of work I was interested in. The job coach set up work-placements based on my choices one being working within the beauty industry. This led on to a weekend job as a beauty consultant. My confidence grew, my energy levels improved rapidly and I gradually increased my hours. I always wanted to travel and Momentum Skills helped me to finally find the confidence to do it. In 2007, I set off to work and travel around Australia. I returned home nineteen months later. After gaining a National Diploma in Beauty Therapy Science, I got full-time employment as a skin spa therapist. But, I d been bitten by the travel bug so decided to set off on another adventure. I spent three months travelling and studying to be a yoga teacher in India. I returned home in April 2013 and am now working as a therapist in another well-known company within the beauty industry. Momentum Skills helped both me and my family to understand and cope with the effects of a brain injury, and given me the tools to manage my new life on a daily basis. They helped me return to work and make the most of my life. I still feel I am growing and learning every day. My brain injury will never go away but I grow stronger knowing I can handle it. 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 job retention support. For further information, visit The Brain Injury Handbook 83

86 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 84

87 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, p109 for contact details.) The Brain Injury Handbook 85

88 Meet Wendy Wendy Foster talks about the changes in her life following her husband s stroke and describes how they coped. We were parents of three children; two daughters in their 20 s and a son of 18. We had also celebrated the birth of our first grandchild a beautiful little girl. The future looked bleak, the children and I were overcome with grief and disbelief and terrified of what the future may bring. On 20th May 2012, our whole family were devastated at the news of my husband s stroke. At the age of 48, it was a blow to us all. For the first few days it was touch and go as to whether he would make it. It took 16 weeks of hospital care before Paul could come home. This presented massive issues and lifestyle changes. Paul ran a successful steel erecting business and I was a primary school teacher. We both loved

89 The consequences of brain injury Section 3 our jobs but it soon became apparent that we would have to give our jobs up for the unforeseeable future. Now we are pleased to be a part of Momentum Skills which has been fantastic for recovery and self-esteem. After attending hospital for 16 weeks, 6 hours a day, the next challenge was to find suitable accommodation for him as he was at that time in a wheelchair. Our daughters became distant (fear I think), my son was very supportive but I wanted him to have a normal life for an 18 year old. Our week is now busy and full. We swim, we go to the gym, we go to Momentum Skills and we even volunteer at The Independent Living Centre. The rehabilitation process has been a long journey in which we have learned so much, met a lot of fantastic people and gained inner strength we never thought we had. Lots of friends and indeed family have kept away and this left us feeling lonely. As a full time carer, it s extremely hard. We were in a situation whereby we went from being at work, seeing each other at weekends, to all of a sudden being thrust together 24 hours a day. We decided that this disability would not beat us and set about setting targets, short, medium and long-term. Constant battles with authorities and bureaucracy ensued. We met some wonderful people on our journey and continue to do so two years on. My husband no longer uses a wheelchair and is able to do a lot more independently. (He doesn t cook or clean mind you he never did anyway!) Through persistence, we have overcome lots of barriers. We have had support from Sandwell Hospital, Moor Green and The University of Birmingham. All journeys are a learning curve, despite all the anguish and hard work we all feel more fortunate than others. We will succeed because of our drive and determination and we will continue our journey for as long as it takes. 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 job retention support. For further information, visit The Brain Injury Handbook 87

90 legal help, when it really matters... legal help, when it really matters... Digby Digby Brown Solicitors help families in Scotland after a serious accident has has caused a loved a loved one one to sustain to sustain a brain a brain injury. As As a firm we are personal injury specialists but but that that doesn t doesn t really really tell tell the the story. story. For For over over years, the firm has been actively involved in in the the brain brain injury injury community, community, the the experience experience built built up up over over this time truly truly allows allows us us to to call call ourselves ourselves experts experts in our field. in our field. As a family member of someone who is a patient in hospital or has been recently As a family member of someone who is patient in hospital or has been recently discharged, you are still reeling from the immediate aftermath of a serious accident. You discharged, you are still reeling from the immediate aftermath of a serious accident. You will have many questions. We understand this, we have helped many other families in the will have many questions. We understand this, we have helped many other families in the same position, over time, come to terms with the situation and deal with the issues. same position, over time, come to terms with the situation and deal with the issues. We work alongside the Child Brain Injury Trust, Momentum, the Brain Injury Rehabilitation We Trust work and alongside the Huntercombe the Child Brain Group. Injury We are Trust, also Momentum, members of the the Scottish Brain Injury Head Rehabilitation Injury Forum Trust and and the the Brain Huntercombe Injury Network Group. We We are have also been members involved of with the Scottish Headway, Head both Injury locally Forum and and the nationally Brain Injury for many Network years Group. and have We written have been for Headway, involved Claiming with Headway, compensation both locally after and Head nationally Injury in for Scotland many years which and was have updated written in for Headway, Claiming compensation after Head Injury in Scotland which was updated in If you have questions about your circumstances, please call us, we are here to help. If you have questions about your circumstances, please call us, we are here to help. Call Chris Stewart on: Call Chris Stewart on: digbybrown.co.uk digbybrown.co.uk

91 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. The Brain Injury Handbook 89

92 Selection of the legal team Bill Braithwaite QC is a specialist in catastrophic personal injury cases and the author of Brain and Spine Injuries The Fight for Justice. Here he outlines the process of choosing legal representation where this is necessary. The following information applies to the legal systems in Scotland and England. In the event of a claim being considered, 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. They are the person who has the daily conduct of the claim and who communicates everything that matters to the person with a brain injury and their 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. In my opinion, it is important to make sure that you select an individual, not just a firm, as it is the individual who you will be dealing with, and who you must trust. It is beneficial for the team to be created at an early stage. It is almost universal that the solicitor would decide to use as a consultant a barrister who specialises in the preparation and presentation of this type of catastrophic claim. That would mean that the solicitor would select and instruct a barrister, and this 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. 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 90

93 Legal issues Section 6 might include those set in the questionnaire opposite. Although it is important to meet the solicitor before deciding whether to instruct them, the questionnaire could be given (or sent) to more than one solicitor, so that some early impression can be gained of their experience. A good track record established by clear evidence is important, and should be explored in detail. It is not sufficient just to rely on a solicitor saying that they, or their firm, have done this type of claim before. You need to know much more: how many, at what value did they finalise, how long ago was it, what was the type of injury, and so on. The response of the solicitor may give some indication of their character; if they are embarrassed or offended by this questionnaire, or consider it impertinent or rude to be asked these questions, 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 they intend to communicate with the client 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. Personal contact is essential, however, because the relationship between the patient and the legal team, including the barristers, is so important. As the claim progresses, the injured person and family should build up complete confidence in the knowledge, experience, support and ability of the legal team. There is no right or wrong way, but there is likely to be a system that will suit the family in question. 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 as finalised. 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? When going to see a solicitor take these useful questions with you. The Brain Injury Handbook 91

94 Setting Standards in Brain Injury Rehabilitation Are you looking for a range of specialist brain injury services designed to the meet individual needs for adults who have associated complex cognitive impairments and/or physical disabilities as a result of their brain injury? Look no further than The OakLeaf Group. With the brand new service The Cotswolds opened this May in Northampton, we now offer: 12 Week Assessment and Specialised Rehabilitation Community Services with Graded Support Maintenance and Long Term Service Bespoke Package in any Level of Service Within each service level, we have developed price bands to ensure commissioners receive best value for money and reducing care costs as residents make progress. To find out more, visit or to make a referral: [email protected] or Case Management Support Services We provide specialist case management and support services for people with an acquired brain injury and ongoing behavioural needs and/or cognitive impairment. Our teams are experienced and specially trained and as a charity focusing on acquired brain injury our services are cost effective. Our success in helping people to be their best after a brain injury spans over twenty years. With bases in East Anglia and the West Midlands, we support private and state funded clients across the UK. To me, Optua UK is the difference between existing and living. Tel: [email protected] Avenues-Rehab Ad 1/4p 85x120mm.indd 1 22/08/ :07

95 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 NCM is a Practice of Health Care Professionals that provides specialist Case Management and Rehabilitation services throughout the North of England with offices in Leeds and North Manchester to support people with acquired brain injury and spinal cord injury and their families. It is our aim to empower people to develop their full potential and enrich their lifestyle through providing a comprehensive client focused service. Working with Solicitors, Deputies and other Professionals intervention by NCM on behalf of Clients broadly falls into the following categories: Please , phone or visit our website for a copy of our Service Users Guide. Career Opportunities We are always looking for good quality Care/Support Workers and Case Managers, so if you are interested in a career in Social Care or are a Health Professional interested in a career in Case Management please contact us for an informal chat. Head Office, Brenton Business Complex, Bond Street, Bury, BL9 7BE Leeds Office, Sugar Mill, Oakhurst Road, Leeds, LS11 7HL [email protected] Northern Case Management Limited Registered in England No

96 Further General Information Making a claim If you are happy with the initial advice received from a solicitor, you should instruct them 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, they 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. 94

97 Legal issues Section 6 Time limits Where the injured person is an adult, the legal time limit for accident claims is normally 3 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 3 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 3-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 caused by 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 95

98 Interim payments You do 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 4 years. Being awarded an interim payment involves the insurers of the defendant paying some of the damages before the case is finalised. 96

99 We are Specialists in Medical Negligence claims. Let us help you. Case Management and Rehabilitation Services 26 Redhouse Road, Tettenhall, Wolverhampton WV6 8ST Specialists in all aspects of case management and rehabilitation for adults and children with catastrophic complex brain and spinal injury, amputees and generic requirements. Case Managers are based throughout the United Kingdom, Ireland, Mainland Europe, Hong Kong and Australia.

100 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, 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. Alternatively, if certain conditions are met the services may be funded by 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 fulfill their obligations, particularly in these times of cuts in local authority and NHS services. 98

101 Legal issues Section 6 Assessment Under Section 47 of the National Health Services 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 put in place necessary services before the point of discharge from hospital. Assessment and provision of services to children (under 18), and in limited circumstances young adults, is generally carried out by local authorities in exercise of their functions under the Children Act Children with disabilities are Children in Need for the purposes of the Children Act, and so have the right to in depth assessments, and may (in many cases must) be provided with services (or Direct Payments in lieu) to meet their assessed needs. The Brain Injury Handbook 99

102 Carers There are thought to be over 5 million carers in the UK, of whom over 1 million provide more than 50 hours of 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 and willingness 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 that 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, a mobile telephone, travel assistance, driving lessons or provision of 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 that will apply 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 people who remain the responsibility of local authorities, which are entitled to means test and charge 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 November 2012). 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 individuallyenforceable duties as local authorities, as the legislation governing the NHS allows it far more discretion about how and when services are provided to patients. For example, once a local 100

103 Legal issues Section 6 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 scope for the provision of Direct Payments to those who are Continuing Healthcare patients. These are available by virtue of the NHS (Direct Payment) Regulations 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, unless specifically authorised to do so by the Court of Protection, or validly appointed to do so under a Lasting Power of Attorney. It may sometimes 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 issuespecific (a person may have capacity to take certain decisions, but not others) as well as timespecific (capacity to take a particular decision may vary at different periods). There is a presumption that a person has capacity. 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 as lacking capacity in relation to a particular issue, any decision taken must be in their best interests. Best interests must always include consideration of the wishes of the person concerned (although if they lack 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 government website will reveal, it is also an area that develops and changes with great speed. Many victims of accident or assault who suffer brain injuries with significant effects do not receive the statutory services to which they may be entitled. Often they, or those who care for them, are too worn down to question whether they are entitled to more than is offered. Many people are not aware that there are detailed laws and binding guidance that spell out the powers and duties of local authorities and the NHS towards those with disabilities. 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 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, The Brain Injury Handbook 101

104 Social service provision and case managers in Scotland Chris Stewart, 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%) 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 stage then as in England voluntary interim payments are often made. Alternatively, social work departments can provide support, possibly through Direct Payments. Lord Carloway in the case of 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 102

105 Legal issues Section 6 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 has been 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 103

106 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 means-testing 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 as to whether to charge and the level of the charge. This is important because 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 that 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 place 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 nonresidential care regimes for those with a brain injury. It is important that the Pursuer gets advice from experienced specialist personal injury lawyers. 104

107 Legal issues Section 6 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 Health Capacity Act (the Act), which came into effect in England and Wales on 1 October 2007 (separate arrangements exist for Scotland and Northern Ireland). 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 The Mental Health Act The Act provides a basis to empower people to make decisions for themself 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. 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 willful 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 Brain Injury Handbook 105

108 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 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 the 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 find the guidance helpful. Deputies Some people may feel that an LPA is not for them. If this is the case, and the 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. 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 to only 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 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. 106

109 Legal issues Section 6 Working with brain injured clients in the Court of Protection Richard Shearing, solicitor at Rix & Kay, talks about the connection with the Court of Protection and how his own work is linked to brain injury. At Rix & Kay we act for many clients with acquired brain injury who have received significant personal injury settlements. The majority of our clients in this position have deputies appointed by the Court of Protection to assist them with the management of their property and financial affairs. My role is to support the financial deputy for a number of clients with brain injuries. This is really fulfilling work as you are closely involved in the process of helping people to put their lives back on track after experiencing life-changing injuries. You get to know your clients really well and see them progress and flourish. I have set out a case study below by way of example. JF: JF was born with cerebral palsy as well as learning disabilities and was already in need of a great deal of support when she sustained her brain injury. At the time of her accident JF was living at home but attended a day centre run by a well known disability charity. She was left unsupervised using the toilet where she fell and hit her head sustaining a brain injury. This had a significant impact on JF s mobility and independence. JF received a significant compensation package from her Personal Injury case which has enabled us to provide comprehensive levels of care and therapies from outside sources. With the assistance of her financial deputy and her case manager, JF has made huge progress since the accident and has defied all expectations. She has ambitions to travel to America with the aim of going to Disneyland. JF grows more independent with every week that passes and we never cease to be amazed at her determination and resolve. We help JF to achieve her ambitions by providing the professional and personal support that she needs and encouragement at every stage. The Brain Injury Handbook 107

110 Tracs Acquired Brain Injury (ABI) Services Our Acquired Brain Injury services across England and Wales are person-centred and dedicated to providing specialist support to the complex needs of individuals with an Acquired Brain Injury. We understand that no two people and no two brain injuries are the same, therefore, we offer different pathways of personalised support to suit different needs. Individualised Support Pathways Tracscare can offer varied specialised brain injury support: Transitional (short or medium term) rehabilitation goal focused placements Short term community skill assessments/cognitive assessment placements Specialist emotional/behavioural support placements Slow stream rehabilitation Long term residential care Supported living tenancies Specialist outreach support in your own home Vocational support Respite placements We also have neuro-disability services to support individuals with conditions such as early onset dementia and Huntington s care. Therapeutic Support All therapeutic input is integrated into daily strategies or functional measured goals in line with the individual s aspirations. Progress for individuals on a rehabilitation pathway is monitored through recognised outcome measures and reviewed regularly by the multi-disciplinary team. Individuals are able to access the local Tracscare Positive Steps and Thinking ahead workshops, to develop their cognitive and social skills under the guidance of our Clinical Lead Nurses, in a friendly and supportive atmosphere. These groups use cognitively based therapeutic work, with the aim of providing a focus on executive, attention and memory skills and social functioning. Participants are encouraged to increase their levels of cognitive functioning whilst having fun and engaging in social interactions. We are able to support individuals who have: Traumatic brain injuries Stroke/ aneurysms Alcohol related brain injuries (including Korsakoff s syndrome) Brain injuries as a result of hypoxia, encephalitis, meningitis and tumours Physical and mobility needs Diabetes, epilepsy and PEG care Behavioural, psychological, emotional and forensic needs Cognitive and executive functioning difficulties (memory, attention skills, information processing, insight, social, problem solving & planning difficulties) Dual diagnosis with Mental Health or substance misuse For more information call , [email protected] or visit

111 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 Bank St, Irvine, KA12 0HL T: E: [email protected] The Brain Injury Handbook 109

112 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: [email protected] 110

113 Useful contacts and resources Section 7 Other organisations Ability Net Central England IBM UK, Birmingham Rd, Warwick, CV34 5JL T: W: Assist UK Redbank House 4 St Chad s Street, Manchester, M8 8QA T: Helpline: E: [email protected] W: Action Against Medical Accidents (AvMA) Freedman House Christopher Wren Yard, 117 High Street, Croydon, CR0 1QG 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) 3 West Gate Court Silkwood Park, Wakefield, WF5 9TJ 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 111

114 British Brain and Spinal Foundation 336 Canterbury Court, Kennington Park, 1 3 Brixton Rd, London, SW9 6DE T: E: [email protected] W: British Institute for Brain Injured Children Knowle Hall, Bridgwater, Somerset, TA7 8PJ T: E: [email protected] 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 8 Footes Lane, Frampton Cotterell, Bristol, BS36 2JQ T: E: [email protected] W: 112

115 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 12 City Forum 250 City Road, London, EC1V 8AF T: E: [email protected] W: Disabled Living Foundation Ground Floor, Landmark House, Hammersmith Bridge Road, London, W6 9EJ 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: The Encephalitis Society The Encephalitis Resource Centre, 32 Castlegate, Malton, North Yorkshire, YO17 7DT T: W: Epilepsy Action New Ansty 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 113

116 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 Head Office, Fern House, Bath Rd, Stroud, GL5 3TJ 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 T: 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: 114

117 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: Royal Society for the Prevention of Accidents RoSPA House, 28 Calthorpe Rd, Edgbaston, Birmingham, B15 1RP T: E: [email protected] W: Shaw Trust Shaw House, Epson Square, White Horse Business Park, Trowbridge, Wiltshire, BA14 0XJ 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 115

118 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 (ww.yell.co.uk). 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: 116

119 Useful contacts and resources Section 7 South-East Rehabilitation units Brain Injury Rehabilitation Trust (BIRT) 3 Westgate Court, Silkwood Park, Wakefield, WF5 9TJ 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, Surrey, GU27 2BJ T: Holy Cross Hospital Haslemere, Surrey, GU27 1NQ T: E: [email protected] W: Huntercombe Hospital Holybourne Avenue, London, SW15 4JD T: E: [email protected] W: The Brain Injury Handbook 117

120 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 Alexandra Hospital The Queen Alexandra Hospital Home Boundary Road, Worthing, West Sussex, BN11 4LT 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: 118

121 Useful contacts and resources Section 7 Regard Partnership Units 1, 6, 7, Princeton Mews, London Road, Kingston upon Thames, Surrey, KT2 6PT T: / W: Rehab Without Walls 27 Presley Way, Milton Keynes, Buckinghamshire, MK8 0ES T: W: Robinia Care, Kent 351 Maidstone Road Gillingham, Kent, ME8 0HU T: W: Royal Berkshire Hospital, NHS Trust London Rd, Reading, RG1 5AN T: 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: Royal Buckinghamshire Hospital Buckingham Rd, Aylesbury, Bucks, HP19 9AB T: E: [email protected] W: The Brain Injury Handbook 119

122 Titleworth Healthcare Titleworth One to One, 1 3 Adelaide Rd, Surbiton, Surrey, KT6 4TA T: E: [email protected] 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 Road Alphington, Exeter, EX2 8TU 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: [email protected] W: Glenside Manor, Wiltshire Glenside, Warminster Rd, South Newton, Salisbury, Wiltshire, SP2 0QD T: E: [email protected] W: Kenwyn Care Home Newmills Lane, Truro, TR1 3EB T: W: 120

123 Useful contacts and resources Section 7 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: 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, BA21 3UA T: W: Rosehill Rehabilitation Service, Torquay Lower Warberry Rd, Torquay, TQ1 1QY T: E: [email protected] W: The Brain Injury Handbook 121

124 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: West Park Rehabilitation Hospital Park Road West, Wolverhampton, WV1 4PW T: W: 122

125 Useful contacts and resources Section 7 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: Floyd Unit, Birch Hill Hospital Rochdale, OL12 9QB 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, Greater Manchester, SK2 5DL T: E: [email protected] W: N-Able Services 2 Power Rd, Bromborough, Wirral, Merseyside, CH62 3QT T: W: Northern Case Management Unit 13, Brenton Business Complex, Bond St, Bury, BL9 7BE T: E: [email protected] W: Ways to Work 2 Champness Hall, Drake St, Rochdale, Greater Manchester, OL16 1PB T: W: The Brain Injury Handbook 123

126 North-East NHS and NHS Trust rehabilitation units Neurorehabilitation Unit, Monkwearmouth Hospital Newcastle Rd, Sunderland, SR5 1NB T: W: Phoenix Unit, Uni Hospital of Hartlepool 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: 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] Hawthorns Care Centre O Neill Drive, Peterlee, SR8 5UP T: W: 124

127 Useful contacts and resources Section 7 Yorkshire and Humberside Rehabilitation units Magnolia Lodge Younger Disabled Unit Tickhill Road Hospital, 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 London Rd Community Hospital 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 The Richardson Mews, Kingstand Gardens, Kingsthorpe, Northampton, NN2 7BH T: E: [email protected] W: The Brain Injury Handbook 125

128 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: 126

129 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 2ZG 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, KA7 2DW T: / E: [email protected] W: Leonard Cheshire, Pinewood Acquired Brain Injury Service 3 St Andrew s Way, Livingston, 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 127

130 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: 128

131 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 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: E: [email protected] W: Develops sport and recreation activities for disabled people. The Brain Injury Handbook 129

132 Discrimination Disability Law Service 12 City Forum, 250 City Road, London, EC1V 8AF T: E: W: Counselling Samaritans Chris, Freepost, RSRB-KKBY-CYJK, PO Box 9090, Stirling, FK8 2SA T: W: The Equality and Human Rights Commission (England) Fleetbank House, 2 6 Salisbury Square, London, EC4Y 8JX T: E: [email protected] W: The Equality and Human Rights Commission (Scotland) 151 West George Street, Glasgow, G2 2JJ T: E: [email protected] W: The Equality and Human Rights Commission (Wales) Ground Floor, 1 Caspian Point, Caspian Way, Cardiff Bay, CF10 4DQ T: E: [email protected] W: 130

133 Index to advertisers Index to advertisers Advertiser Page Advertiser Page 3L Care 74 Freeths 40 Adams Neuro Physiotherapy Ltd 46 Glebe House inside back cover Admiral Group Plc 18 Harris Fowler inside front cover AICS Group 63 AJ Case Management 97 Allied Neuro Therapy 22 Anthony Gold Solicitors 69 Asons 6 Bakers Personal Injury Solicitors 22 Beecham Peacock Solicitors 18 British Psychological Society 74 Carpenters Solicitors 6 Community Case Management Services Ltd 97 Complete Neuro Physio 32 Consensa Care ABI Ltd 69 Dame Hannah Rogers Trust 46 Helping Hands 40 hlw Keeble Hawson 63 Hobbs Rehabilitation 69 Homerton University Hospital - Specialist ABI Outreach Team 12 Huntercombe Group 26 Irwin Mitchell 54 Langley Wellington LLP 32 Leo Abse & Cohen Solicitors 47 Livability Icanho 22 Mercia Case Management 32 Milkwood Care Ltd - The Lodge at Castleford 33 Mistreatment.com 133 Danshell Group 54 Mistreatment.com back cover Digby Brown LLP 88 First ScotRail Limited 46 Motability 40 Neil Hudgell Solicitors 59 The Brain Injury Handbook 131

134 Index to advertisers Advertiser Page Advertiser Page Novero - Jubilee Court 47 Novero - Oak Court 63 Oakleaf Group 92 Optua UK (Avenues Group) 92 Thompsons Solicitors 4 Thorneycroft Solicitors 97 Tracscare Group Ltd 108 V P Forensic Ltd 33 PJ Care Ltd 74 Powell Spencer & Partners 18 Proactiv Rehabilitation & Reintegration Services 6 Prokare Ltd 93 Pryers Solicitors LLP 97 Queen Elizabeth Foundation 46 Rehab Options Ltd 63 St George Healthcare Group 37 Sussex Healthcare 41 Team Brain Injury Support 93 The Children s Trust

135 The Brain Injury Handbook 133

136 Notes 134

137 Notes Notes The Brain Injury Handbook 135

138 Notes 136

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