The document defines rehabilitation as a process that bridges the gap between medical treatment and living daily life. It aims to restore people's ability to participate in society despite disability. Rehabilitation is patient-oriented and focuses on ability rather than disease. It requires cooperation between medical and social services to address both impairment and environmental barriers.

1. Rehabilitation – What is it? Defining the Dimensions and Scope of Rehabilitation Dr Clive Thursfield Consultant Clinical Scientist

2. Rehabilitation Module Setting the Scene For much of the history of health care, diagnosis and treatment have been the main focal point, the result of which is the ‘medical model’ that has predominated. Such a model sets the physician at the centre of health care and, for the most part divided the process of ‘getting well’ from “living the everyday life”. Correspondingly statutory provision of health care (NHS) has, in large part, been separate from the provision of social care (Social Services).

3. Bridging the gap between ‘getting well’ and “living the everyday life” has advantages both clinically and economically. [1] One of the long standing problems has been that whilst the acute medical condition did not warrant continuation of a hospital stay the patient was not sufficiently ‘recovered’ to be able to return home or even to an interim arrangement such as a nursing home (even if an appropriate one was available). [ 1] Economic Consequences of Early Inpatient Discharge to Community-Based Rehabilitation for Stroke in an Inner-London Teaching Hospital . Roger Beech, PhD; Anthony G. Rudd, FRCP; Kate Tilling, MSc Charles D. A. Wolfe, MD ? ?

4. Changes to the demographics and to the ability of our medical sciences to save and extend life have exacerbated the need to close the gap between acute and community based care. Prevalence of common disabling conditions (such as stroke and fractured femur) increase markedly in older people. Frail elderly people undergo major surgery, and trauma victims who in previous years would have died now survive. However, this may be at the cost of significant impairment and disability. Also, the past few decades have seen the development of new chronically disabling conditions such as AIDS.

5. People who found themselves in a life limiting situation as a result of a health problem were referred to as disabled or handicapped, the difference between these being unclear to most people. The use of such terms and the corresponding social response created a ‘separate’ population which was different to the ‘normal’ population.

6. We had therefore a double perspective that mitigated against best health as we would perceive it now. Firstly the divide between curative medicine and community based care Secondly the perception of a separate population of ‘disabled or handicapped’ people.

7. Disability is not an attribute of an individual, but rather a complex collection of conditions, many of which are created by the social environment. Hence the management of the problem requires social action, and it is the collective responsibility of society at large to make the environmental modifications necessary for the full participation of people with disabilities in all areas of social life. The issue is therefore an attitudinal or ideological one requiring social change, which at the political level becomes a question of human rights.

8. We therefore need a different way of looking at how we assist people who are experiencing health related difficulties that are detracting from the life they wish to lead

9. A definition of Rehabilitation [1] 1) The restoration of someone to a useful place in society 2) Vindication of a person's character and the re-establishment of that person's reputation [1] WordReference.com

10. The new rehabilitation paradigm differs from the curative one in many ways. It is an individualised, patient-oriented activity focused on disability rather than disease. Rehabilitation moves from impairment towards helping the patient find “ability” in the presence of obvious disability. [1] [1] A new series on fostering patients’ abilities in the presence of disability: Rehabilitation medicine Peter B Disler, Ian D Cameron, Stephen F Wilson: MJA Practice Essentials: http://www.mja.com.au/public/issues/177_07_071002/dis10096_fm.pdf

11. The current paradigm shift in the understanding of best health practice comes from the realisation that there is a significant social component of disability and demands a symbiotic relationship between medical and social models of care. Such a relationship is fundamental to World Health Organisation (WHO) international classification system ICF – International Classification of Functioning, Disability and Health. [1] [1] http://www3.who.int/icf/icftemplate.cfm

12. The new classification has modified the concept of disability to recognise that personal and environmental factors directly influence the experience of people disability, and the term “handicap” is no longer acceptable because of its negative connotations. Rehabilitation is therefore seen as a coordinated process which embraces “activity” and “participation”.

13. This does not mean that all rehabilitation received by individuals conforms to the above definitions because there remain many interpretations of rehabilitation that tend towards the older medical models. However this is changing as a result of such things as the introduction of the specific medical discipline of Rehabilitation Medicine, which embraces and promotes the concept of multi-disciplinary team working and life-long interventions, and the socio-economic imperative to deliver more cost effective intervention.

14. A further contrast between the old curative or medical models and current rehabilitation paradigm is the significance of the end user (or patient) in the final outcome. Historically it was the ‘service system’, mostly embodied in the doctor’s opinion , that knew what was best for the patient. Although professional knowledge and professional experience are crucial to quality of care in rehabilitation the involvement of the user in decision making is essential to the outcome.

15. If a person has a painful finger and seeks help for a remedy it can reasonably be assumed that their goal is not to have a painful finger. In most cases there is a reasonable expectation that this goal can and will be achieved. When it is achieved the measure of this achievement is the satisfaction and relief felt and expressed by the individual who had the sore finger and not by any sense of the level of sophistication of the treatment or the completion of a therapy regime.

16. If however a person has suffered brain injury, incurring serious and permanent cognitive difficulty, their hope (goal) may be to go back to their original work. However unrealistic their goal maybe it is important that their expectation shapes and drives the intervention process because not to do so will ultimately lead to unsuccessful rehabilitation.

17. It is crucial for the rehabilitation team to understand this expectation and to work with the individual, wherever possible allowing them to take the lead, in setting realistic goals, both as interim and long term.

18. Another definiton of Rehabilitation "Rehabilitation is a process or a set of processes which is planned and is limited in time, having well-defined goals and means; where several professionals or services co-operate in assisting the individual user in his of her efforts to achieve best possible functioning and coping capabilities, and promoting independence and participation in society". [1] [1] Øivind Lorentsen, Rehab-Nor, Norway

19. An important concept is that the goals that shape the rehabilitation process are not, in essence, different from the type of goals that all of society sets for itself. They are individual to the person but reflect the sort of things that society at large aspires to, namely activity, participation and independence .

21. Cooperation Strategy Tools How am I going to get out of this situation ? Call the RAC ? Use the car jack ?

22. Assistive Technology Inherent ability / skills Cooperation Strategy Tools needed Personal assistance services Disabled

23. Classification systems (taken from David B Gray, Washington University, School of Medicine) ICF

24. Aims of ICF ICF is a multipurpose classification designed to serve various disciplines and different sectors. Its specific aims can be summarized as follows: to provide a scientific basis for understanding and studying health and health-related states, outcomes and determinants; to establish a common language for describing health and health-related states in order to improve communication between different users, such as health care workers, researchers, policy-makers and the public, including people with disabilities; to permit comparison of data across countries, health care disciplines, services and time; to provide a systematic coding scheme for health information systems.

25. These aims are interrelated, since the need for and uses of ICF require the construction of a meaningful and practical system that can be used by various consumers for health policy, quality assurance and outcome evaluation in different cultures.

26. ICF Components Body Functions & Structures Activities & Participation Environmental Factors Barriers Facilitators Functions Structures Capacity Performance

27. For example, one may: have impairments without having capacity limitations (e.g. a disfigurement in leprosy may have no effect on a person's capacity); have performance problems and capacity limitations without evident impairments (e.g. reduced performance in daily activities associated with many diseases); have performance problems without impairments or capacity limitations (e.g. an HIV-positive individual, or an ex-patient recovered from mental illness, facing stigmatization or discrimination in interpersonal relations or work); have capacity limitations without assistance, and no performance problems in the current environment (e.g. an individual with mobility limitations may be provided by society with assistive technology to move around); experience a degree of influence in a reverse direction (e.g. lack of use of limbs can cause muscle atrophy; institutionalization may result in loss of social skills).

28. In the context of health: Body functions are the physiological functions of body systems (including psychological functions). Body structures are anatomical parts of the body such as organs, limbs and their components. Impairments are problems in body function or structure such as a significant deviation or loss. Activity is the execution of a task or action by an individual. Participation is involvement in a life situation.

29. Activity limitations are difficulties an individual may have in executing activities. Participation restrictions are problems an individual may experience in involvement in life situations. Environmental factors make up the physical, social and attitudinal environment in which people live and conduct their lives.

30. qualifiers qualifiers qualifiers qualifiers ICF Functioning and Disability Contextual Factors Body Functions and Body Structures Activities and Participation Environmental Factors Personal Factors

31. Body Functions Body Structures Functioning and Disability ICF Functioning and Disability Contextual Factors Body Functions and Body Structures Activities and Participation Environmental Factors Personal Factors Skin and related structures Functions of the skin and related structures Structures related to movement Neuromusculoskeletal and movement-related functions Structures related to the genitourinary and reproductive systems Genitourinary and reproductive functions Structures related to the digestive, metabolic and endocrine systems Functions of the digestive, metabolic and endocrine systems Structures of the cardiovascular, immunological and respiratory systems Functions of the cardiovascular, haematological, immunological and respiratory systems Structures involved in voice and speech Voice and speech functions The eye, ear and related structures Sensory functions and pain Structures of the nervous system Mental functions

32. Domains d1 Learning and applying knowledge d2 General tasks and demands d3 Communication d4 Mobility d5 Self-care d6 Domestic life d7 Interpersonal interactions and relationships d8 Major life areas d9 Community, social and civic life Activities and Participation Functioning and Disability ICF Functioning and Disability Contextual Factors Body Functions and Body Structures Activities and Participation Environmental Factors Personal Factors

33. Environmental factors make up the physical, social and attitudinal environment in which people live and conduct their lives. These factors are external to individuals and can have a positive or negative influence on the individual’s performance as a member of society, on the individual’s capacity to execute actions or tasks, or on the individual’s body function or structure. Contextual Factors ICF Functioning and Disability Contextual Factors Body Functions and Body Structures Activities and Participation Environmental Factors Personal Factors Individual Societal

34. Environmental factors are organized in the classification to focus on two different levels: (a) Individual – in the immediate environment of the individual, including settings such as home, workplace and school. Included at this level are the physical and material features of the environment that an individual comes face to face with, as well as direct contact with others such as family, acquaintances, peers and strangers. Contextual Factors ICF Functioning and Disability Contextual Factors Body Functions and Body Structures Activities and Participation Environmental Factors Personal Factors Individual Societal

35. (b) Societal – formal and informal social structures, services and overarching approaches or systems in the community or society that have an impact on individuals. This level includes organizations and services related to the work environment, community activities, government agencies, communication and transportation services, and informal social networks as well as laws, regulations, formal and informal rules, attitudes and ideologies. ICF Functioning and Disability Contextual Factors Body Functions and Body Structures Activities and Participation Environmental Factors Personal Factors Individual Societal Contextual Factors

36. Personal factors are the particular background of an individual’s life and living, and comprise features of the individual that are not part of a health condition or health states. These factors may include gender, race, age, other health conditions, fitness, lifestyle, habits, upbringing, coping styles, social background, education, profession, past and current experience (past life events and concurrent events), overall behaviour pattern and character style, individual psychological assets and other characteristics, all or any of which may play a role in disability at any level. Personal factors are not classified in ICF. However, they are included to show their contribution, which may have an impact on the outcome of various interventions. Contextual Factors ICF Functioning and Disability Contextual Factors Activities and Participation Environmental Factors Personal Factors Individual Societal Body Functions and Body Structures

37. There is a widely held misunderstanding that ICF is only about people with disabilities; in fact, it is about all people. The health and health-related states associated with all health conditions can be described using ICF. In other words, ICF has universal application.

38. According to ICF, disabilities are the dimensions of dysfunction that may result for an individual person at three levels: Losses or abnormalities of bodily function and structure. Limitations of activities. Restrictions of participation.

39. As a consequence of this, three different kinds and/or levels of interventions are pointed out: Impairment interventions: Medical interventions to deal with the impairment, and preventive interventions to avoid activity limitation. Activity limitation interventions: Rehabilitative interventions and provision of assistive devices and personal assistance to mitigate the activity limitation, and preventive interventions to avoid participation restrictions. Participation restriction interventions: Public education, equalisation of opportunities, social reform and legislation, architectural “universal design” applications and other ways of accommodating activity limitations in major life areas.

40. + BODY FUNCTIONS + BODY STRUCTURES + ACTIVITIES AND PARTICIPATION + ENVIRONMENTAL FACTORS ICL

41. + BODY FUNCTIONS + CHAPTER 1 MENTAL FUNCTIONS + CHAPTER 2 SENSORY FUNCTIONS AND PAIN + CHAPTER 3 VOICE AND SPEECH FUNCTIONS + CHAPTER 4 FUNCTIONS OF THE CARDIOVASCULAR, HAEMATOLOGICAL, IMMUNOLOGICAL AND RESPIRATORY SYSTEMS + CHAPTER 5 FUNCTIONS OF THE DIGESTIVE, METABOLIC AND ENDOCRINE SYSTEMS + CHAPTER 6 GENITOURINARY AND REPRODUCTIVE FUNCTIONS + CHAPTER 7 NEUROMUSCULOSKELETAL AND MOVEMENT-RELATED FUNCTIONS + CHAPTER 8 FUNCTIONS OF THE SKIN AND RELATED STRUCTURES

42. + BODY STRUCTURES + CHAPTER 1 STRUCTURES OF THE NERVOUS SYSTEM + CHAPTER 2 THE EYE, EAR AND RELATED STRUCTURES + CHAPTER 3 STRUCTURES INVOLVED IN VOICE AND SPEECH + CHAPTER 4 STRUCTURES OF THE CARDIOVASCULAR, IMMUNOLOGICAL AND RESPIRATORY SYSTEMS + CHAPTER 5 STRUCTURES RELATED TO THE DIGESTIVE, METABOLIC AND ENDOCRINE SYSTEMS + CHAPTER 6 STRUCTURES RELATED TO THE GENITOURINARY AND REPRODUCTIVE SYSTEMS + CHAPTER 7 STRUCTURES RELATED TO MOVEMENT + CHAPTER 8 SKIN AND RELATED STRUCTURES

43. ACTIVITIES AND PARTICIPATION + CHAPTER 1 LEARNING AND APPLYING KNOWLEDGE + CHAPTER 2 GENERAL TASKS AND DEMANDS + CHAPTER 3 COMMUNICATION + CHAPTER 4 MOBILITY + CHAPTER 5 SELF-CARE + CHAPTER 6 DOMESTIC LIFE + CHAPTER 7 INTERPERSONAL INTERACTIONS AND RELATIONSHIPS + CHAPTER 8 MAJOR LIFE AREAS + CHAPTER 9 COMMUNITY, SOCIAL AND CIVIC LIFE

44. ENVIRONMENTAL FACTORS + CHAPTER 1 PRODUCTS AND TECHNOLOGY + CHAPTER 2 NATURAL ENVIRONMENT AND HUMAN-MADE CHANGES TO ENVIRONMENT + CHAPTER 3 SUPPORT AND RELATIONSHIPS + CHAPTER 4 ATTITUDES + CHAPTER 5 SERVICES, SYSTEMS AND POLICIES

45. CHAPTER 7 NEUROMUSCULOSKELETAL AND MOVEMENT-RELATED FUNCTIONS + Functions of the joints and bones (b710-b729) + Muscle functions (b730-b749) + Movement functions (b750-b789) > b798 Neuromusculoskeletal and movement-related functions, other specified > b799 Neuromusculoskeletal and movement-related functions, unspecified

46. + Movement functions (b750-b789) + b750 Motor reflex functions > b755 Involuntary movement reaction functions + b760 Control of voluntary movement functions + b765 Involuntary movement functions > b770 Gait pattern functions + b780 Sensations related to muscles and movement functions > b789 Movement functions, other specified and unspecified

47. b765 Involuntary movement functions Functions of unintentional, non- or semi-purposive involuntary contractions of a muscle or group of muscles. Inclusions: involuntary contractions of muscles; impairments such as tremors, tics, mannerisms, stereotypies, motor perseveration, chorea, athetosis, vocal tics, dystonic movements and dyskinesia Exclusions: control of voluntary movement functions ( b760 ); gait pattern functions ( b770 )

48. + BODY FUNCTIONS + BODY STRUCTURES + ACTIVITIES AND PARTICIPATION + ENVIRONMENTAL FACTORS ICL

49. ACTIVITIES AND PARTICIPATION + CHAPTER 1 LEARNING AND APPLYING KNOWLEDGE + CHAPTER 2 GENERAL TASKS AND DEMANDS + CHAPTER 3 COMMUNICATION + CHAPTER 4 MOBILITY + CHAPTER 5 SELF-CARE + CHAPTER 6 DOMESTIC LIFE + CHAPTER 7 INTERPERSONAL INTERACTIONS AND RELATIONSHIPS + CHAPTER 8 MAJOR LIFE AREAS + CHAPTER 9 COMMUNITY, SOCIAL AND CIVIC LIFE

50. + CHAPTER 1 LEARNING AND APPLYING KNOWLEDGE + CHAPTER 2 GENERAL TASKS AND DEMANDS + CHAPTER 3 COMMUNICATION + Communicating - receiving (d310-d329) + Communicating - producing (d330-d349) + Conversation and use of communication devices and techniques (d350-d369) > d398 Communication, other specified > d399 Communication, unspecified + CHAPTER 4 MOBILITY + CHAPTER 5 SELF-CARE + CHAPTER 6 DOMESTIC LIFE + CHAPTER 7 INTERPERSONAL INTERACTIONS AND RELATIONSHIPS + CHAPTER 8 MAJOR LIFE AREAS + CHAPTER 9 COMMUNITY, SOCIAL AND CIVIC LIFE

51. + Communicating - receiving (d310-d329) + Communicating - producing (d330-d349) + Conversation and use of communication devices and techniques (d350-d369) + d350 Conversation + d355 Discussion + d360 Using communication devices and techniques > d369 Conversation and use of communication devices and techniques, other specified and unspecified > d398 Communication, other specified > d399 Communication, unspecified

52. d360 Using communication devices and techniques Using devices, techniques and other means for the purposes of communicating, such as calling a friend on the telephone. Inclusions: using telecommunication devices, using writing machines and communication techniques

53. xxx.0 NO problem (none, absent, negligible,… ) 0-4 % xxx.1 MILD problem (slight, low,…) 5-24 % xxx.2 MODERATE problem (medium, fair,...) 25-49 % xxx.3 SEVERE problem (high, extreme, …) 50-95 % xxx.4 COMPLETE problem (total,…) 96-100 % xxx.8 not specified xxx.9 not applicable Illustration of Code with Qualifiers

54. Illustration of Code with Qualifiers Component: Activities and Participation Item code: Walking on different surfaces Qualifier 1 : Current performance moderate Qualifier 2: Capacity without assistance mild Qualifier 3: Capacity with assistance not specified Qualified 4: Performance without assistance not applicable D 4502 . 2 1 8 9

55. First Qualifier: Current performance Describes the individual’s functioning in his or her current environment using whatever assistance as is usual Incorporates unique demands of built environment, socio-cultural factors, laws, and support

56. Second Qualifier: Capacity without assistance Capacity in a standard environment, without assistance. Aims to “indicate the highest probable level of functioning that a person may reach in a given domain at a given moment.”

57. Third Qualifier: Capacity with assistance The best probable level of functioning with the provision of direct assistance Assessment is performed in a standard environment Amount and type of assistance should be realistic and feasible

58. Fourth Qualifier: Performance without assistance Describes what an individual does in his or her current environment Environmental facilitators and devices that are usually present should not be considered

59. Gregory BODY STRUCTURE “ Amputate … below the knee”: s7501.4 s = body structure 7 = related to movement 5 = lower extremity 01 = lower leg .4 = COMPLETE impairment ENVIRONMENT “ Health maintenance organization rejected his request for a prosthetic leg”: e5801.3 e = environment 5 = services, systems, and policies 8 = health services, systems, and policies 01 = health systems, “…such as systems for implementing regulations and standards that determine eligibility for … assistive technology or other adaptive equipment…” .3 = SEVERE barrier ACTIVITY and PARTICIPATON “ Consigned to crutches”: d 465.3 d = activity & participation 4 = mobility 65 = walking and moving around .3 = SEVERE limitation “ Can’t be on the job”: d 8502.4 d = activity and participation 8 = major life areas 50 = remunerative employment 2 = full time employment “engaging in all aspects of work for payment on a full-time basis, as an employee” .4 = COMPLETE difficulty

60. Assignement part 1 - Using the on-line ICF code each aspect of the following person. ( http://www.who.int/classifications/icf/en/ ) Nina is a 42-year-old mother of two daughters. She has been diagnosed with Major Depressive Disorder. There is a history of domestic verbal and physical abuse by her husband. She reports a dramatic decrease in appetite. When probed further she admits she sometimes only eats one small meal per day, if at all. She also reports that she sleeps more than 12 hours a day, and sometimes does not make it to work because she oversleeps. Her performance at work is mediocre due to her fixation on family issues and inability to concentrate on tasks. As a result of her depression and abusive home environment the family is behind on utility bills and car payments.

61. The dimensions and components of Rehabilitation Technicians Biomedical engineers Psychologists Social workers Occupational therapists Physical therapists Nurses Medical doctors The People Special teachers (seeing and hearing) Speech therapists Clinical Scientists Audio physicist Opticians Rehabilitation engineer Housing and building Work School sector (all levels) Preschool sector Social sector Health (all levels) The places

62. Rehabilitation 5 divisions – “ professional ” 23 divisions - “specialism” 21 Knowledge and Skill requirements

63. The Rehabilitation Process - Overview Five main Areas [1] Medical - all aspects of specialised clinical assessment, multidisciplinary working and negotiation and monitoring of structured goals. Social and community aspects of rehabilitation including the assessment and management of complex disability in community settings. Psychological aspects of disability, handicap and rehabilitation including experience of the psychological aspects of disability and psychological assessment which should include work with a clinical psychologist. Counselling [1] The British Society for Rehabilitation Medicine

64. Organisation and management in rehabilitation . Experience of multidisciplinary teamwork is essential. Training in team dynamics, leadership, goal setting, resource and financial management is also required. Research in rehabilitation including principles of statistics, trial design and data analysis and knowledge of both quantitative and qualitative research.

65. Further subdividing the components of rehabilitation are - Neurological rehabilitation including the management of brain injury and stroke as well as the management of those people with progressive disorders such as multiple sclerosis and motor neurone disease. Spinal cord injury i ncluding the management of all aspects of spinal cord injury from the acute event to rehabilitation and long term support.

66. Rheumatological and musculo-skeletal rehabilitation i ncluding the management of orthopaedic and non-inflammatory and inflammatory (arthritic) joint disorders, back pain and other pain management. Rehabilitation of people with amputation and limb deficiencies, wheelchair provision and orthotics. Includes all aspects of the assessment and management of people in need of prostheses or orthoses as well as knowledge, skills and experience in all aspects of wheelchair provision.

67. Electronic Assistive Technology. Including environmental control systems, communication aids, computer access, robotics, special wheelchair control systems and the integration of all these technologies.

68. Other areas necessary to fully describe the scope and dimensions of rehabilitation are – Acute stroke Palliative medicine Cardiac rehabilitation Rehabilitation within the elderly population Rehabilitation of sensory deficits Continence services/urodynamics Residential units for disabled people Disabled school leavers and young adults Respiratory rehabilitation Driving for disabled people Sexual aspects of disability

69. Learning disability services Sports medicine Orthopaedic rehabilitation Vocational rehabilitation Paediatric rehabilitation Other specialty attachments Pain management

70. To deliver rehabilitation within the dimensions listed above the following knowledge and skills are required (21) Understanding of impairment, disability and handicap levels in the comprehensive assessment of physical, cognitive and psychological aspects of rehabilitation. Understanding of the application of appropriate tools in assessing functions, disability, and outcome for a broad range of impairment groups. Skills in planning a multidisciplinary / interdisciplinary rehabilitation programme, and mediating constructive exchange of multidisciplinary clinical perspectives.

71. Knowledge and understanding of the allied health disciplines to effectively integrate their contributions into the process of rehabilitation. Skills in liaising with community care providers to meet the psychosocial needs of disabled persons, and to formulate effective pre-discharge planning. Understanding and application of concepts of community re-integration including occupational and vocational rehabilitation needs.

72. Understanding of the behavioural and social sciences as they relate to rehabilitation and carer dynamics, psychopathology, motivation and learning in relation to adjustment, and compensation for lost or impaired mental and social abilities associated with physical disabilities. Knowledge and skills in the prescription of therapeutic exercises in Neurological and musculoskeletal disabilities, and understanding of the concept of aerobic exercise and its relationship to management of chronic heart, lung, kidney diseases, diabetes mellitus and obesity.

73. Knowledge of the prescription of, and indications and contraindications for, the use of adaptive devices and training required for their use. Knowledge of the prescription of, and indications and contraindications for prosthetic and orthotic devices, together with their biomechanical principles, methods of assessment, follow up and check out procedures. Knowledge of physical modalities employed in the treatment of musculoskeletal disorders including prescription, indications and contra indications of heat and cold therapy, TENS.

74. Knowledge and skills in the management of specific rehabilitation problems and complications such as spasticity, swallowing disorder, neurogenic bladder and bowel incontinence. Knowledge in neuropsychology as related to the practice of neurorehabilitation. Knowledge in the interpretation of special investigations such as electrodiagnosis for neurorehabilitation, videofluoroscopy to detect problems of swallowing, stress test to evaluate of cardiopulmonary fitness, and urodynamic studies to evaluate urinary incontinence.

75. Knowledge of the indications for and skills in the administration of soft tissue injections, intra-articular injections and motor/nerve blocks are encouraged. Knowledge in the pathophysiology of conditions related to lifestyle, exercise, recreation and stress. Knowledge and design of architecture which affects persons with disabilities.

76. Rehabilitation engineering principles, which are relevant to clinical rehabilitation, especially mechanical, electrical and hydrodynamic principles. Understanding of clinical research designs and programme evaluation, as well as interpretation of scientific data. Understanding the concepts of quality assurance and peer review.

77. Ethics This is a very big subject and we will barely touch on it here, except to establish that whilst ethical issues have long been seen as the province of acute medical services they are none-the-less important in rehabilitation. The five principles of ethics are shown below – Beneficence - to do good Autonomy – honor personal choice Nonmaleficence – do no harm Justice – to be fair/equal treatment Fidelity – be loyal, honest, keep promises.

78. One of the areas that gives rise to ethic dilemmas in rehabilitation is informed consent. If a patient has reduced cognitive ability because of, for instance, a brain injury, they may refuse to participate in treatment that, in the view of the multidisciplinary team is beneficial if not essential. Do the MDT stop delivering the treatment, risking long term harm to the patient or do they persist against the wishes of the patient ? Perhaps the family can persuade the patient to comply, or perhaps the family share the views of the patient and support their view.

79. It might be judged that the patient is not able to make an informed decision about their own care in which case the multidisciplinary team are able to make the decision.

80. Mental Capacity Act (April 2005)

81. Background: 2 key cases – Beverly Lewis and Bournewood 1995 Law Commission Report “Mental Incapacity” 1997 Consultation Paper “Who Decides?” 1999 Government Proposals “Making Decisions” 2000 Incapacity (Scotland) Act 2000 2003 (June) Draft Mental Incapacity Bill 2004 (June) Mental Capacity Bill introduced into Parliament 7.4.2005 Mental Capacity Act receives Royal Assent April / October 2007 - Act to come into force

82. Mental Capacity Act (April 2005) Reforms and updates the current law where decisions need to be made on behalf of others Will govern decision-making on behalf of adults both where they lose mental capacity at some point in their lives and where the incapacitating condition has been present since birth Covers a wide range of decisions on personal welfare as well as financial matters and decision-making by attorneys or court-appointed “deputies” Covers research involving people who lack capacity Provides for new independent mental capacity advocates Provides recourse to Courts with power to deal with welfare, healthcare and financial decisions Replaces Part VII of the Mental Health Act 1983 and the whole of the Enduring Power of Attorney Act 1985 Act to apply predominantly to those over 16 year of age

83. The Principles (Section 1) A person must be assumed to have capacity unless it is established that he lacks capacity A person is not treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success A person is not treated as unable to make a decision merely because he makes an unwise decision An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action

84. Capacity (Section 2) A person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain (It does not matter whether the impairment or disturbance is permanent or temporary) A lack of capacity cannot be established merely by reference to a person’s age or appearance or a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about his capacity Questions of capacity must be decided on the balance of probabilities

85. Inability to Make Decisions (Section 3) A person is unable to make a decision for himself if he is unable: to understand the information relevant to the decision to retain that information to use or weigh that information as part of the process of making the decision to communicate his decision (whether by talking, using sign language or any other means) A person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand a general explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means) Information relevant to a decision includes information about the foreseeable consequences of: Deciding one way or another Failing to make the decision The fact that a person is able to retain the information relevant to a decision for a short period only does not prevent him from being regarded as able to make the decision

86. Who should assess capacity? The person who assesses an individual’s capacity to make a decision will usually be the person who is directly concerned with the individual at the time the decision needs to be made. This means that different people will be involved in assessing someone’s capacity to make different decisions at different times. For most day-to-day decisions, this will be the person caring for them at the time a decision must be made If a doctor or healthcare professional proposes treatment or an examination, they must assess the person’s capacity to consent. In settings such as a hospital, this can involve the multi-disciplinary team. But ultimately, it is up to the professional responsible for the person’s treatment to make sure that capacity has been assessed

87. Best Interests (Section 4) In determining best interests the person making the determination must not make it merely on the basis of a person’s age or appearance or a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about what might be in his best interests Those making best interests decisions must consider all the circumstances appearing to be relevant. In particular they must take the following steps: Consider whether it is likely that the person will at some time have capacity in relation to the matter in question and when that is likely to be Encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for and any decision affecting him Where a determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death So far as is ascertainable consider the person’s past and present wishes and feelings beliefs and values that would be likely to influence his decision if he had capacity factors he would be likely to consider if he were able to do so If practicable and appropriate to consult them, the views of: any person named by as someone to be consulted any person engaged in caring for him or interested in his welfare any donee of a lasting power of attorney granted by him any deputy appointed for him by the court as to his past and present wishes and feelings and the factors he would consider if he were able to do so

88. Recording establishment of best interests Records should show why a particular action was in the person’s best interests, particularly where the decision conflicts with views of those consulted. Those consulted should be recorded.

89. Exercise

90. Mrs Siobhan O’Connor is an 89-year-old woman who lives alone in her own home. Her severe chronic obstructive pulmonary disease and severe arthritis make it very difficult for her to look after herself and get around safely. She has just about managed to cope with an intensive package of care, including a daily visit from a home carer and a service to help her get up in the morning and go to bed in the evening. Her daughter and family live some distance away, but they visit every weekend to get some shopping in and do her laundry. However, her family have noticed that she seems to be getting confused and her home carer has noticed that she is often sitting in urine soaked clothes. She denies that she is having continence problems and has been complaining to her home carer that her family have been neglecting her and that she has not seen them for several weeks, although this is clearly untrue as her shopping and laundry are still being done. Her GP has suggested that there may be signs of Mrs O’Connor developing dementia. Her family have suggested to her that she might want to consider going into residential care but she refuses to consider “going into the workhouse”. Her family and her home carer have explained to her that they are thinking of a nice cosy home close to her daughter, but she will only refer to it as the workhouse. When her daughter tries to suggest that she goes to look at the home they have in mind, Mrs O’Connor gets very angry and refuses to discuss the issue any further. Mrs O’Connor’s care manager cannot get her to discuss the issue, either. This discussion has not been helped by Mrs O’Connor’s refusal to use her hearing aid. Mrs O’Connor’s GP has visited to give her her flu jab, but she refuses it, saying that it made her feel ill last year. The GP explains that it is particularly important for her to have the jab because of her breathing problems, but she is adamant that she does not want the vaccination.

91. Questions What might trigger an assessment of capacity? What could be done to maximise Mrs O’Connor’s capacity to make the decision about residential care? What information is there to suggest that Mrs O’Connor lacks capacity to make the decision about going into residential care? What information is there to suggest Mrs O’Connor lacks capacity to refuse her flu jab?

92. What might trigger an assessment of capacity? (Refusal to consider residential care, claiming family are not visiting, denial of continence problems, refusal of flu jab) What could be done to maximise Mrs O’Connor’s capacity to make the decision about residential care? (Incontinence due to UTI?- treat if so / general ‘MOT’, show picture / DVD of home, invite home to visit her, take to see home, more than one home proposed, timing of discussion, someone not involved in dispute to discuss with her, taking / giving time to discuss / consider subject, check hearing aid, advocate) What information is there to suggest that Mrs O’Connor lacks capacity to make the decision about going into residential care? (Unable to understand the information – believes it is the workhouse despite other information; unable to weigh the information – will not discuss further. Is there another option, such as more domiciliary care, for ‘least restrictive’ option) What information is there to suggest Mrs O’Connor lacks capacity to refuse her flu jab? (None, it may only be an unwise decision)

93. Outcome Measures How can we be sure we are delivering the best intervention for our patient ? How can we be sure that we are providing as good a service as another rehabilitation unit ? As discussed previously individual goals, set in conjunction with the patient can be set and measured but these are not generalisable to other situations or even to other parts of an individual’s rehabilitation.

94. In rehabilitation, outcome is difficult to measure because (1) usually several outcomes are relevant, (2) relevant outcomes are affected by multiple factors in addition to treatment, (3) even good measures rarely reflect the specific interest of any individual patient or member of the rehabilitation team, leading to some dissent. Measurement of general quality of life is difficult because there is little agreement as to the nature of the construct; ie what is a ‘good’ quality of life?

95. One example of a global outcome measure (related to assistive technology) is the Psychosocial Impact of Assistive Devices Scale (PIADS©; Day & Jutai, 1996). It is a 26-item, self-rating questionnaire designed to measure user perceptions of how assistive devices affect quality of life. It is intended to be a generic measure, applicable to virtually all forms of AT. The PIADS© describes user perceptions along three dimensions:

96. Adaptability (the enabling and liberating effects of a device); Competence (the impacts of a device on functional independence, performance and productivity); Self-esteem (the extent to which a device has affected self-confidence, self-esteem and emotional well being).

97. Scores can range from –3 (maximum negative impact) through zero (no perceived impact) to +3 (maximum positive impact). The PIADS© measures of the impacts of a wide range of assistive technologies, in populations of adults who have various forms of disability and medical condition (Jutai, 1999).

98. Assignments Assignment (1) - Using the on-line ICF code each aspect of the following person. ( http:// www.who.int/classifications/icf/en / ) Nina is a 42-year-old mother of two daughters. She has been diagnosed with Major Depressive Disorder. There is a history of domestic verbal and physical abuse by her husband. She reports a dramatic decrease in appetite. When probed further she admits she sometimes only eats one small meal per day, if at all. She also reports that she sleeps more than 12 hours a day, and sometimes does not make it to work because she oversleeps. Her performance at work is mediocre due to her fixation on family issues and inability to concentrate on tasks. As a result of her depression and abusive home environment the family is behind on utility bills and car payments. Assignment (2) identify an outcome measure used in rehabilitation and describe its scope and limitations. Assignment(3) Describe what is meant by reliability, validity, responsiveness of an outcome measure and discuss possible difficulties in achieving these in an outcome measure.