11.6 Persons with physical disabilities: a rehabilitation approach
Oxford Textbook of Public Health
Persons with physical disabilities: a rehabilitation approach
Anthony B. Ward
The rehabilitation process
Relationship between rehabilitation and disability
Multidisciplinary and interdisciplinary
Organization of services
Delivery of rehabilitation services
Models of delivery
Who is rehabilitation for?
Is the rehabilitation resource designed for the client’s needs?
Effectiveness of rehabilitation
Benefits of dedicated rehabilitation
What happens if rehabilitation does not take place?
Bladder and bowel problems
Loss of limb
Disability equipment and new technologies
Rehabilitation outcome measures
With an increasingly ageing population, physical disability places greater demands on health care and society. According to a survey performed by the Office of Population Census and Surveys (OPCS) in 1988 and 1989 (Martin I>et al. 1988), people with disabilities account for 10 per cent of the United Kingdom population. Not only is the total proportion expected to rise, but the proportion of people with severe disabilities (OPCS grades 5 to 10) is also likely to increase. Great improvements have been made in reducing mortality, illness, and trauma, so that people can live longer even with the most severe disabilities. Their quality of life depends initially on health services, both in the acute phase and then in rehabilitation, but subsequently on social services, vocational services, and employment services to restore occupational activity and to make an accessible environment in which to live with as little difficulty as possible. Health professionals in rehabilitation, especially those involved in specialized rehabilitation, have an important role in the assessment of disability, treatment, and co-ordinating and involving professionals in other agencies to address the individual’s needs.
Rehabilitation has developed considerably in recent years and it is important to describe the totality of rehabilitation rather than to confine it to just health-based activity. The establishment of a multiprofessional approach has concentrated expertise and led to a better understanding of what can be achieved. The use of new technology, particularly in the fields of electronics, computers, and informatics, is creating new possibilities for disabled people, their families and carers, and rehabilitation professionals. These developments are leading to greater participation for many disabled people and their carers.
The medical approach to physical disability has developed in a rather haphazard way. It is divided into services for children, adults, and elderly people. Paediatrics and geriatric medicine have taken on other activities, and only for adults is there a defined medical specialty called rehabilitation medicine. This is a relatively new specialty in the United Kingdom, created in 1984 and gaining Department of Health official designation in 1990. The specialty comes under a variety of names in different countries, ranging from physical medicine to rehabilitation medicine; the most commonly used term in Europe is physical and rehabilitation medicine. This chapter does not cover the history of the speciality, as this can be found elsewhere (Story 1992; Ward 1997).
Rehabilitation gained increasing importance after the First World War and established itself after the Second World War. Spinal cord injury units were founded at that time and the American Board of Physical Medicine and Rehabilitation was probably the first to start training and certifying doctors in the field from 1947 through the work of Krusen, Johnson, and others (Martin and Opitz 1997). The specialty has had a stable base in the United States through the American Academy of Physical Medicine and Rehabilitation and internationally two main medical organizations have represented national societies (the International Federation of and Rehabilitation Physical Medicine and Rehabilitation) and individual members (International Rehabilitation Medicine Association). They have now united to form the International Society of Physical Medicine and Rehabilitation, which aims to raise the international profile of medical rehabilitation.
A major survey of disability in the United Kingdom during 1988 and 1989 showed an overall prevalence of 10 per cent of the population (Martin et al. 1988). This survey consisted of a number of reports, making a considerable contribution to the knowledge of disability and covering not only the numbers of disabled people, but also commenting on the situation of those living at home, children, services, transport, employment, and the financial circumstances of disabled adults living at home. It produced estimates of the prevalence of the 13 main domains of disability based on International Classification of Impairments, Disabilities and Handicaps (ICIDH) criteria and a new weighting scale of severity for each of these domains, ranging from 1 (least severe) to 10 (most severe). The survey found a prevalence of disability of 135 per 1000 population in adults aged 16 years and over, which increased to 142 per 1000 if people in institutional care were included. Table 1 shows the prevalence of the 13 domains of disability according to age. Over three-quarters (77 per cent) were found to have one or more of these physical disabilities, implying a prevalence rate of 104.1 per 1000 aged 16 years and over living in the community, and 109 per 1000 if those in institutions are included.
Table 1 Disability domains—estimates of prevalence of disability in the United Kingdom by type (ICIDH) and age per 1000 population
Difficulty with locomotion is the most common disability and has the highest prevalence for all age groups. Physical disability is likely to occur in combination with other types of disability, especially sensory disabilities. The combination of physical and mental disabilities appears to increase the severity of the disability more than physical disability alone and is the most likely to result in institutional care, as shown in Table 2.
Table 2 Types of disability by severity category expressed as a percentage within each severity group
In the United Kingdom most disability is due to musculoskeletal disorder (Table 3). Neurological conditions make up 13 per cent of the total of disability in all ages, but have a higher impact in the more severe categories of the OPCS scale and in younger people, where they contribute to most of the severe disability seen. Therefore this should be reflected in services for specialized rehabilitation, which tends to concentrate on people severely disabled by neurological disease.
Table 3 Frequency of disease groups causing physical disabilities and all disability for adults in private households (per 1000 population)
Severe disability is also associated with multiple pathologies and people over the age of 60 years are more likely to have two or more conditions. For instance, arthritis and hypertension coexisted in more than a quarter of people aged 60 or over. With each additional condition, there is an exponential rise in disability, typically found in older people. Rehabilitation is thus likely to be focused in this group at comorbid conditions—one of the main distinguishing features between rehabilitation for the elderly and younger adults, who are more likely to have a single condition.
There is also a geographical distribution of disease, and conditions seen commonly in some countries may be quite unusual even in near neighbours. The prevalence of multiple sclerosis rises as one travels further north in Europe, with high incidences and prevalences in Scotland and Scandinavia. The prevalence rises from 98 per 100 000 in Southampton, England, to 178 per 100 000 in the north of Scotland (BSRM 1993). The reasons for this are not known, but a combination of inherited and environmental factors are suggested. Services have to take this into account for the needs of the local population.
Table 3 provides further information on the types of disability caused by various disease groups. Most of the findings are to be expected, and confirm the great preponderance of musculoskeletal problems.
The data so far have been restricted to the impact of physical disability on society, but it is also important to look at the more common disease groups leading to physical disability. Rehabilitation medicine services for physically disabled people in the United Kingdom are primarily directed at neurological and musculoskeletal conditions, but also encompass an additional interest in people disabled by respiratory and cardiac diseases. Moreover they are also concerned with amputees, the provision of wheelchairs and special seating, and the development of assistive technology, particularly in the areas of communication aids and environmental controls.
Certain conditions, such as diabetes mellitus and hypertension, are common and do not always in themselves lead directly to much loss of personal functioning, but they have complications which have a significant impact on both acute and rehabilitation services. Therefore services for these groups of patients cannot be planned without taking into account the rehabilitation of complications such as stroke, myocardial infarction, peripheral vascular disease, visual impairment, tissue viability, etc. Wade and Langton-Hewer described four groups of neurological disease and disorders, for which a rehabilition response is required (Wade and Langton-Hewer 1987):
those causing major physical disability affecting mobility, self-care, and everyday activities
those causing disturbance of cognition and/or behaviour
those causing pain
those causing an episodic disturbance of consciousness and/or neurological function.
These groups are also applicable to other disorders and are therefore useful to service planners
All of these groups require health services, but rehabilitation is more focused on groups 1 to 3. Table 4 shows the incidence and prevalence of some of those in group 1, the most applicable to physical rehabilitation. They are mostly neurological, but some musculoskeletal conditions have been added.
Table 4 Group 1 disorders
The annual incidence of first stroke is 200 per 100 000, of whom 80 will die in a year (one-third die within 3 weeks and half within 3 months); the most common cause of death is myocardial infarction. Sixteen per cent of those who survive for 3 months will die from a further stroke or cardiac disease, and this is age related. Thus the prevalence is around 550 per 100 000, of whom 300 will have a significant disability (Royal College of Physicians 1989). Around one-third of strokes are in people less than 60 years old.
In disability terms, 25 per cent improve rapidly during the first week, but an equal number deteriorate (Bamford et al. 1988; Wade 1992). More than half (50–70 per cent) are admitted to hospital; 25 per cent of those kept at home become severely disabled (Wade et al. 1985; Bamford et al. 1988). The resources required in the first 3 months are for effective management of motor, sensory, communication, and cognitive impairments, as well as for mood problems.
The prevalence is between 99 and 178 per 100 000 (BSRM 1993). The median survival of 35 years is now prolonged, but an increasing number of people require rehabilitation services for long periods of time, as rehabilitationists deal more effectively with disabling complications. The natural history is one of exacerbation and remission, with a gradual decline in recovery levels leading to impairment of mobility, dexterity, communication, cognition, continence, and nutrition, and the development of pressure sores, contractures, and emotional problems. Given the long and variable course of the disease, financial difficulties are common and carers require help (Martin and White 1988; Martin et al. 1989). Homes need adaptation and whole households are disrupted by the caring routines necessary. Marital breakdown is common, reducing the pool of potential carers. Intermittent hospital-based services are needed for the treatment of specific problems, but most people can be maintained at home with community nursing, maintenance rehabilitation therapy, and respite care.
The annual incidence of 20 per 100 000 generally occurs in older people, but covers the age range of 55 years and above (Association of British Neurologists 1992). Of the 180 per 100 000 with the disease, about 40 per cent have severe disability, but they can be helped by new treatments which are becoming available. Their higher cost will increase the pressure on pharmacy budgets and there is an inequitable availability of them in the United Kingdom. The disease is still progressive and incurable, but patients can be helped with their mobility problems, communication, and bulbar and mental slowing. Patients can typically manage their impairments and disabilities quite well for many years, but more care is eventually required in a similar way to that for multiple sclerosis and other chronic diseases.
Motor neurone disease
The annual incidence of 2 per 100 000 and median survival of 1.5 years leads to a prevalence of 6 per 100 000 with severe disability (Buckley et al. 1983). This disease is usually progressive and rapidly fatal, but some patients experience a milder attenuated course. Riluzole, an antiglutamate, is a new treatment which has been shown to slow the progression of disability and lengthen survival (Lacomblez et al. 1996). Despite this, motor neurone disease still rapidly advances to disability and death in the majority of cases. Management is aimed at preserving motor and functional skills through therapy and orthotics, and technology is most effective at maintaining quality of life until late in the disease (Cochrane 1989; Cox 1992). Carer support is particularly necessary because of the rapid progression of the disease and encompasses both practical help and emotional support. Because of the rapid nature of change, needs alter steadily and rehabilitation has to respond quickly. If a wheelchair or other specialist equipment takes 6 months to be provided, need soon outstrips provision, leading to a great potential for wasted resources and frustration in providing appropriate and effective rehabilitation. The direct input of a specialist rehabilitation team with a physician in rehabilitation medicine can ensure good forward planning for prospective disability and handicap.
Cerebral palsy, spina bifida, and the muscular dystrophies
While the incidences of cerebral palsy (2 per 1000) and muscular dystrophy (1.3 to 3.3 per 10 000 live births) have remained relatively constant, the prevalence (200 and 90 per 100 000 population, respectively) has increased with improved survival (Brett and Lake 1991; Lipkin 1991). There is renewed interest in the treatment of spasticity in young children with cerebral palsy. It is now possible to delay, and even in some circumstances avoid, the traditional treatment of surgery to the Achilles tendons through aggressive antispastic treatment, such as with botulinum toxin type A. Long-term longitudinal studies are underway to assess the abilities and participation of these young people as they leave school and progress into adulthood.
In contrast, the incidence of live births with spina bifida is decreasing, as it can now be diagnosed antenatally. The prevalence is declining and is probably less than 2 per 100 0000 school leavers (McBride and Ward 1991; Chamberlain et al. 1993; Ward 1994).
The incidence of brain injury is also variable. Most authors describe an incidence of 250 minor brain injuries per 100 000 population (BSRM 1998), but many head- injured patients are ‘lost’ in other injuries. A study in 1989 in North Staffordshire (Barrett et al. 1995) indicated the true incidence to be 1330 per 100 000 population. The rate for severe and very severe injuries is 20 per 100 000 population (18 severe and 2 very severe) (BSRM 1998). More importantly in this context, the prevalence of persisting disability is 150 per 100 000 (Price and Ward 1997). Survivors have a normal lifespan in the absence of epilepsy, immobility (paticularly tetraplegia), and recurrent chest or urinary infections (Jennett et al. 1979; Ashwal et al. 1994). The most important aspects of the ensuing disability are cognitive and behavioural rather than physical. Most can be managed in the community, but a small number require inpatient treatment for severe behavioural disorders (Ward 1993). Access to neuropsychology, neuropsychiatry, and community psychiatric nursing is required. With better treatment and increased survivals, more people who would have previously died are now surviving in vegetative states. In very severe traumatic brain injury the prevalence is 1 to 14 per cent and survival is now reported at over 20 years (Andrews et al. 1996).
Spinal cord injury
In comparison with brain injury, this is relatively rare. However, numbers are boosted by middle-aged and elderly people developing spinal paralysis secondary to diseases such as metastases and central disc herniation. The annual incidence of traumatic spinal cord injury is 2 per 100 000 and life expectancy is virtually normal (Multi-Society Task Force on PVS 1994). Although initial and post-acute rehabilitation is carried out at designated specialist centres, follow-up and maintenance is often shared between the specialist unit and local provision. Long-term follow-up studies have shown the benefit of continued specialist input, particularly in the areas of bladder management, optimizing residual motor function, maternity and motherhood, and ageing (see below). Spinal cord injury units do call patients back, but this often involves long tiring journeys and the main requirements are disability equipment, particularly for activities of daily living and services to promote continence, tissue viability, and prevent complications, such as intercurrent illnesses, contractures, etc. Because these injuries tend to happen in younger populations, provision for family life and ageing is necessary. Non-traumatic spinal disease usually occurs in older patients, is due to tumour, infection, ischaemia, or vertebral problems, and can usually be managed locally.
The prevalence of severe disability due to rheumatoid and osteo-arthritis is 130 per 100 000 and 300 per 100 000 respectively (Kurtzke 1975). Rehabilitation is normally provided via the rheumatology or orthopaedic services, but close working with rehabilitation departments is necessary for wheelchair and orthotic provision. Community rheumatology and rehabilitation services bring specialist expertise of identification of patient needs closer to primary care teams as well as to disabled people and have shown benefits in close liaison with social services and community therapy services.
The annual incidence of lower-limb amputation is 30 per 100 000, of whom 20 will require limb fitting (Bradley et al. 1984). In the same population there will be four or five upper-limb amputations. Many amputations are due to vascular insufficiency (64 per cent) or diabetes (21 per cent), and only a few (8.5 per cent) are traumatic (McColl 1986). Smoking is a major factor. Prospective amputees require access to expert advice and information on the rehabilitation programme, prosthetic options, and possible outcomes. In the immediate post-amputation phase, a fully comprehensive integrated rehabilitation package must be available with the aim of restoration of maximum self-care and independence. Prosthetic limbs are provided for appropriate patients and are maintained at subregional centres—approximately one per 1.5 million population. Satellite limb centres have been established where the population and local geography demand. The provision of some inpatient beds for appropriate patients requiring amputee rehabilitation is strongly recommended (Amputee Medical Rehabilitation Society 1992).
This aspect of rehabilitation is outside the remit of this chapter and is mentioned for completeness. It forms an important area of rehabilitation activity and has been proven to be effective in improving abilities and participation. The principles behind cardiac and respiratory rehabilitation are similar to those for physical disability and reference is made elsewhere to this clinical activity (see Chapter 9.1 and Chapter 9.3).
Rehabilitation differs from acute medicine by concentrating on the effect of the disease/injury on the functioning of individuals and their families rather than on the diagnosis. The family or ‘significant others’ invariably need rehabilitation as much as the patient and it is therefore additionally important to highlight some of the important impairments.
The overall incidence is approximately 11 per cent (King’s Fund Pressure Sore Study Group 1989) and around 25 per cent of those affected are aged 15 to 64 years (King’s Fund Pressure Sore Study Group 1989). The prevalence is 5 per cent in general hospitals and a considerable number of younger disabled people contribute to this. The total cost of treating one significant pressure sore is now £38 000 at 1999 prices (Barbanel et al. 1977). Standardized scoring assessments of risk factors are now available but some need validation. All provider units should have prevention policies in operation (Thomas et al. 1980). The incidence in local provider units should be monitored as a routine and fundamental part of service quality assessment.
The prevalence of regular urinary incontinence is approximately 44 per 1000 population with a ratio of 2.9 females to each male (Stewart 1975). About four per 1000 will require active advice and treatment at any one time. Faecal incontinence is less common. While some sufferers require urodynamic assessment, the majority can be treated by community services.
Many people with physical disabilities experience sexual dysfunction and/or associated emotional problems (King’s Fund Consensus Statement 1988). Counselling services are required to deal with both the emotional aspects of partner attraction and body image, and the fears and physical difficulties of performing the sexual act, whether the disabilities are physical or psychological.
Speech, communication, and related disorders
Such disorders result from a wide range of diseases including stroke, multiple sclerosis, parkinsonism, traumatic brain injury, cerebral palsy, respiratory disorders, and laryngeal disease. Fifteen per cent of stroke survivors have a speech disorder (Lincoln et al. 1984). The beneficial effects of speech and language therapy have been demonstrated (Bax et al. 1988), and clear protocols should be available for patients requiring assessment by a speech therapist. Included here are assessment and treatment for related impairments such as swallowing disorders. Many patients have other disabilities, and multidisciplinary assessment is often required before treatment plans can be formulated. The most severely affected patients may require communication aids. Swallowing problems also come under the responsibility of speech and language therapists, as they often go together with communication dysfunction and severe disability.
Sensory—vision and hearing
The prevalence of impaired vision is 520 per 100 000 population and 200 people per 100 000 are severely deaf (Anonymous 1986). Thus sensory handicap may compound problems for people with other physical problems. Specialist service requirements for these deficits are outwith the scope of this chapter.
Disabled school leavers and young adults
Children with disabilities have traditionally been provided with their own distinct services, and moving into adult life at 16 years of age causes considerable difficulties. They are disadvantaged by a lack of health and social care and have decreased oppportunities for employment, education, and financial security. They make up about 1.7 to 2 per cent of the school population in England and Wales, and those in the more severe OPCS disability categories should have a transitional plan from the age of 13 years of age. Local authorities, in particular education and social services, have a statutory role to meet the conditions in Sections 5 and 6 of the Disabled Person Act 1986 (WHO 1980). The health service participates in some areas to ensure that there is a clear pathway in follow-up and disablity assessment and management as these young people move from paediatric to adult services. A report commissioned by the Department of Health outlines these responses clearly (Chamberlain et al. 1993). From a health perspective, the evidence shows that they have poorer vision and dentition than their abled-bodied peers, orthopaedic and foot problems, and poor knowledge of how to access services. Many cannot even get to a general practitioner and have never had a consultation without the presence of a parent; many have little idea about their own health and independent living with a disability. The dedicated services are patchy, but have reported improvements in many areas of life. A study will soon report on the outcomes of young people, who have been through two dedicated services in comparison with two areas where there have only been ad hoc arrangements (Ward and Houston 1993).
The rehabilitation process
Rehabilitation is a precise activity and the World Health Organization (WHO) definition of 1980 still applies today (WHO 1980). It is quite different from care and describes a goal-oriented activity. Similarly, it is quite different from ‘therapy’, which contributes to the rehabilitation process in individual recipients, but may not always be required for everyone. Therapy and rehabilitation are not synonymous.
Box 1 Rehabilitation—WHO definition (WHO 1980)
An active process, by which those disabled by injury/disease achieve a full recovery, or, if full recovery is not possible, realize their optimal physical, mental, and social potential and are integrated into their most appropriate environment
Health-based rehabilitation—working definition
A dedicated, designated, multiprofessional activity taking an active and holistic approach to care, which is centred on the individual needs of patients and carers, starts in earnest when the patient is medically stable, and continues through community reintegration and beyond, is goal orientated and is easily and appropriately accessible
Rehabilitation medicine (Ward and Houston 1993)
A consultant subacute specialty concerned with the secondary and tertiary management of the medical aspects of physical disability (especially in the fields of neurological and musculoskeletal disease, trauma, and amputation), which require specialist rehabilitation expertise
Rehabilitation therapy (Ward and Houston 1993)
Treatment provided by, or under the direction of, nurses, physiotherapists, occupational therapists, speech and language therapists, clinical psychologists, dietitians, chiropodists, and so on
Relationship between rehabilitation and disability
It is important to look further than the medical implications of physical disability, which may or may not confer a disadvantage and often have an impact on the social well being of the individual and carer. The terms mean different things to different groups and tend to be less specific for disability and handicap, and so this chapter will follow the philosophy behind the WHO definitions.
The original WHO report described four terms: pathology, impairment, disability, and handicap (WHO 1980). Medical practice is based on the concept of arriving at a diagnosis and providing a treatment, which aims to cure the patient. In the context of medical and social progress and the increasing importance of degenerative diseases. In medical practice, the relatively new concepts of improving quality of life and prevention of deterioration and complications have assumed greater priority. Disease and injury can cause the five scenarios described below. While rehabilitation is involved in all of them, the issue is to identify where it contributes to a better quality of life compared with that achieved if it had not taken place. The value of rehabilitation is discussed below, as is the risk to health if it does not take place.
Figure 1 shows the models or patterns of disease where rehabilitation has an impact. Rehabilitation is most effective in model 2 (post-stroke or brain injury with some recovery of function), model 3 (post-stroke or brain injury with no recovery of function), and model 4 (multiple sclerosis or rheumatoid arthritis with a relapsing course of improvement and deterioration), where its impact can preserve function, manage disability, and prevent complications of disability. It can also provide people with the means and education to live satisfying lives. In these people, rehabilitation can make an impact above that expected from natural recovery from a disease or injury, allowing people to gain more abilities because of the rehabilitative experience. Most people in group 1 (following limb fracture, where return of full function is expected) will improve despite rehabilitation, but may benefit from therapy, whereas people in group 5 (cancer, motor neurone disease) are going to deteriorate progressively despite the efforts of rehabilitation. However, there is much that can be done for both groups and for their carers in the areas of equipment provision, assistive technology, and education. Therefore rehabilitation units have to define their activity and their clientele if they are to be effective and successful.
Fig. 1 Models of disease and disability.
The rehabilitation process uses different philosophies to assist people in achieving their aims. For instance, if the objective of rehabilitation is to allow someone to climb upstairs to gain access to the bathroom, there are several ways of achieving this:
the underlying disease process could be treated to restore full function to the individual (pathology)
the person could be trained to improve their strength through, for instance, fracture repair, pain relief, etc. (impairment)
the person could be retrained to walk up and downstairs (disability)
the person could be provided with a stairlift and two wheelchairs, one for upstairs and one for downstairs (handicap).
At this juncture, it is important to define and distinguish between the terms set out by the WHO in the ICIDH (WHO 1980).
Impairment: any loss or abnormality of psychological, physiological or anatomical structure or function
Disability: any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being
Handicap: a disadvantage for a given individual resulting from an impairment or disability, which limits or prevents the fulfilment of a role that is normal for age, sex, and social and cultural factors for that individual.
The WHO reported again in 1997 (ICIDH-2) because it was felt that the terms disability and handicap were somewhat negative and did not actually reflect the rehabilitative approach (WHO 1997). A more positive way to describe this was in the substitution of the terms ‘disability’ and ‘handicap’ for ‘ability’ and ‘participation’. Figure 2 shows the role of impairment and ability in contributing to participation. Health service rehabilitation can thus be active in managing impairments and abilities, as well as in addressing societal issues.
Fig. 2 The context of health and rehabilitation services on impairments, abilities, and participation.
Rehabilitation is much more than health based, and the relationships between health services in the United Kingdom and other agencies, such as employment and social services, have not developed together. A lack of both funding and volition has hampered the good work of the Prince of Wales Advisory Group on Disability and the King’s Fund in the late 1980s, when a framework for action was published as part of the Living Options in Practice (Fiedler and Twitchin 1990). The essential elements of a comprehensive system of services for disabled people are listed below. Their definitions of disadvantage are different from those of health-based organizations and access to services is highlighted as the most significant blight to disabled people, no matter the cause of their disability (Fig. 3).
Fig. 3 Living options principles.
A response point to users’ needs: a single point of entry to the service system, easily identifiable and easily accessible, offering information and advice on all aspects of disabled living, and help with the process of obtaining services through assessing, co-ordinating, and tracking requirements for, and delivery of, services.
A place to live: a range of housing options to suit individual lifestyles and life stages, including individually adapted dwellings, shared or clustered accommodation with support, and residential facilities offering 24-hour on-site support.
Personal support services: appropriate, flexible, and sufficient assistance with personal care and daily living tasks, domestic/home-making duties and social/quality of life activities, enabling the individual to live as independently as he or she is able or wishes.
Access to the community: the opportunity to participate in all aspects of ordinary community life, including the availability of employment, education, leisure activities, transport, and health care.
Specialist services: a wide variety of services to minimize or overcome physical or sensory impairment—services that supplement and enable individuals to use ordinary community services.
Opportunities for personal development: training, counselling, and advocacy opportunities that enable individuals to aspire to and reach their full potential and take advantage of the opportunities available.
Rehabilitation is a multiprofessional activity that depends upon good communication between staff and the individual skills of the professionals involved. If it is to work, the team must have clear rehabilitation objectives for the patient, which should be created with the full co-operation of the patient and significant others. The value of teamwork in this setting is that the output of the team is greater than the summation of the individual professional inputs. Where teamwork scores is in the sharing of expertise and workload. There are fairly blurred margins between the roles of the team members, and successful teams thrive on everyone contributing despite professional boundaries.
Most rehabilitation teams for physical disability comprise a basic core of professionals who interact with each other. The professions most commmonly seen are shown in Fig. 4.
Fig. 4 A core specialist rehabilitation team.
Multidisciplinary and interdisciplinary
Rehabilitation teams should be more than a simple collection of different health professionals. The individuals need to work as part of an interdisciplinary team and understand the roles and values of their colleagues. The team should work with the disabled person and family to set appropriate, realistic, and timely treatment goals within an overall co-ordinated rehabilitation programme. The goals of rehabilitation must be set with the active co-operation of the disabled person and family and need to be adjusted over time and according to progress. In other words, goals should be client centred and should not be set on a discipline-by-discipline basis. The team should not be asking ‘What are the goals for the occupational therapist this week?’ but ‘What are the goals for the patient this week and how can the occupational therapist help to achieve them?’ This is the difference between a multidisciplinary team and an interdisciplinary team. A multidisciplinary team is simply a collection of a number of disciplines working as separate individuals within their own discipline, albeit as part of a rehabilitation team. An interdisciplinary team is a collection of individuals who bring their own experience, professional skills, and expertise to the team and are prepared to work across professional boundaries. The case history below shows interdisciplinary teamwork in action and there are common actions for many professionals to work on. In addition, team members also have to get on with each other and good sociability is a key factor. In this way, rehabilitation is able to minimize and prevent disability and handicap by providing a co-ordinated source of information, advice, and treatment for the disabled person and the family, with the team acting as provider and catalyst.
Case history 1
BG is a 29-year-old married woman and mother of two small children: spontaneous pontine haemorrhage resulting in a locked-in syndrome; spontaneous improvement to spastic quadriplegia, worse on right than left. Problems include spastic quadriplegia, expressive dysphasia, spastic dysarthria, depressed and tearful, inappropriate emotional reactions, pain from spastic limbs and jaw, recurrent chest infections, and urinary incontinence.
Objectives and plans
Botulinum toxin to jaw muscles; analgesia and gabapentin for limb pain (doctor).
Requires foot flat on ground; botulinum toxin to spastic calf muscles; stretch afterwards; cast lower leg (doctor/physiotherapist/occupational therapist). Antispastic medication (doctor/nurse).
Supply ankle–foot orthosis (doctor/orthotist).
Positioning in bed to hemiplegia (nurse).
Transfers—prevent inversion with ankle–foot orthosis (physiotherapist/occupational therapist).
Powered indoor/outdoor wheelchair; seating required (Jay cushion); assess safety in chair (occupational therapist/nurse).
Hoist initially; work on spastic limbs to effect transfers; reduce from three helpers to one within 3 months (physiotherapist/nurse).
Teach husband and parents safe transfers (physiotherapist/nurse).
Assess home (resettlement officer).
Check pressure areas (nurse/occupational therapist).
Wheelchair service to measure seating pressures (occupational therapist).
Lie on bed for 2 hours between 1 and 3 p.m. to relieve pressure points (nurse).
Lose weight—1 kg per fortnight (nurse).
Assess comprehension; work on simple word production and needs on ward (speech and language therapist).
Letter board (speech and language therapist).
Litewriter communicator (speech and language therapist).
Claudius Converse telephone to contact children (speech and language therapist/occupational therapist).
Percutaneous endoscopic gastrostomy feeding tube inserted; check feeds and weight (nurse).
Stimulate palatine and pharyngeal movements; check videofluoroscopy four times weekly (speech and language therapist).
Remove catheter; toilet training hourly (nurse).
Bowel management (nurse).
Antidepressants given; reassess after 4 weeks (doctor).
Assess understanding; team support for consistent approach (clinical psychologist).
Assess B when independently mobile in wheelchair and using communicator; ask at goal planning what she and husband want (occupational therapist).
Meet husband (± parents) within 2 weeks (doctor).
Family education and information; assess home (nurse/resettlement officer/occupational therapist).
Assess family ability to cope with her at home (all).
Financial planning (social worker).
Family care, day care, B’s role at home, etc. (social worker).
Organization of services
Rehabilitation must be a core service in each locality but there are some activities which are either very costly or require specific expertise, such that the logistics of providing them in each district would not be cost effective. Similarly, some conditions, such as motor neurone disease and spinal injuries, are too rare for each locality to develop the necessary skills to deal with them effectively. Therefore service delivery should be based on a pyramid with super-specialized services (low numbers/high activity and expertise) at the top and general rehabilitation (high numbers, e.g. after limb fracture) at the bottom (Fig. 5).
Fig. 5 Service organization
Doctors should take the rehabilitative needs of their patients into account, but need themselves to dedicate time to take on specialized rehabilitation as an integral member of a multiprofessional team. Just as importantly, they need the expertise, aptitude, and experience of a formal training programme. Doctors with other responsibilities, such as acute medicine (e.g. geriatric medicine), or from other specialties (e.g. neurology or rheumatology) cannot properly dedicate themselves to medical rehabilitation. Their main specialty will always occupy most of their time. In addition, switching from dealing with pathology and impairments to abilities and participation requires a shift of philosophy, which may compromise patient care.
General rehabilitation: characterized by health professionals working within thier professional roles in relative isolation from others, that is in a polydisciplinary manner
Special services: dedicated areas of working, where individual professionals have varying degrees of contact with others involved in the rehabilitation process. Typical examples are nurse advisors to continence and tissue viability services, dysphagia services, and so on. In some instances, this may involve multidisciplinary rehabilitation and the development of specialist multiple sclerosis nurses, Parkinson’s disease nurses, back pain service co-ordinators are examples, where these individuals may have a general clinical role working within a team and an extra responsibility to these respective patients
Specialized rehabilitation: dedicated multidisciplinary or interdisciplinary rehabilitation rehabilitation, where the team meets to define the rehabilitation objectives and activity and professionals work together to achieve the aims of the process. It is often inpatient based, but there are now a number of community teams working in this way
Delivery of rehabilitation services
It should be stressed that, following acute illness or injury, rehabilitation should start in the immediate recuperative phase under the care of the admitting physician or surgeon. Moving patients to an acute rehabilitation facility as soon as they are medically stable is beneficial in the prevention of inappropriate use of psychotropic drugs, complications, and in promoting a good early rehabilitation experience (McLellan 1991). Stroke and brain injury units demonstrate this (Hall and Cope 1995) and the amount of therapy applied to these patients has a direct influence on their ability to lead an independent life (Shiel et al. 1999). Thereafter patients require an integrated approach to community living and the opportunity for life skills, work, education, and maintaining personal, emotional, and social contacts. In acute rehabilitation, they need to be under the care of the doctor and the rehabilitation team. There are good reasons for this, not least because the risk of deterioration and medical complications is still high, but rehabilitation activity also needs to be regarded as credible and valued by other specialties, and for this medical leadership is necessary.
However, people living at home or in an institution with a disability require an approach which will respond to their health and social needs. They require support in employment and, if that is not possible, in occupational activity. Their health and disability needs require regular review to ensure appropriate responses, and intermittent medical rehabilitation may be necessary to overcome intercurrent illness/deterioration or prevent complications. Above all, people need to live in a suitable place, have an income sufficient for their needs, understand the consequences of their condition on their lives, and learn how to maximize their opportunities in life.
The standards proposed by the British Society of Rehabilitation Medicine for the numbers of beds required per district for rehabilitation medicine only account for younger adults (Turner-Stokes et al. 2000). The numbers required for older people and children is under debate at present and needs to be separated from acute beds for the elderly. In a climate of reduction of acute beds and redesign of community hospitals to meet the needs of the local primary care purchasing group or trust, it is imperative that sufficient attention is paid to the facilities for rehabilitation. This means not only beds, but also outpatient facilities; the criteria for inpatient rehabilitation are proposed below. There is a need to separate rehabilitation from care, and to develop an active goal-oriented programme to meet the patient’s agreed objectives.
Criteria for inpatient rehabilitation
Patients who require 24-hour nursing and medical supervision for their rehabilitative needs.
Patients with neurological and locomotor disorders who have the capacity for, require, and will benefit from rehabilitation, i.e.patients in whom the evidence shows that active intervention improves function, life satisfaction, or prevents deterioration.
Severely disabled patients whose needs can only be met by a multiprofessional team practising interdisciplinary rehabilitation.
Patients with complex needs, i.e. requiring more than two professionals working in a team.
Some very severely disabled patients with little hope of improvement in personal functioning, but who require assessment and appropriate equipment and whose families require education for caring purposes.
People whose frailty or physical/mental health means that they are unlikely to cope with an active rehabilitation programme are probably unsuitable. However, they still often benefit from the educative process.
Rehabilitation services have traditionally been delivered in units reflecting recovery from illness and injury (Table 5). There are now a variety of models to choose from and, while each location may not have the need, finance, or expertise to develop a comprehensive provision of specialist services, a means of accessing them is necessary. However, a number of basic core services are required. For instance, the number of people disabled from arthritis, back pain, and brain injury would suggest that local services are necessary and it would be irresponsible to send residents from one area to another. The Royal College of Physicians of London first laid out some of the core local and regional services in its report Physical Disability—1986 and Beyond (Royal College of Physicians 1986), and in 1993 the British Society of Rehabilitation Medicine published a report entitled Advice to Purchasers—Setting Contracts for Rehabilitation Medicine (Ward and Houston 1993). The services described in these documents have been brought together in Table 6 and reflect what each district should be providing compared with those which are of a more specialized nature.
Table 5 Conditions requiring local rehabilitation services
Table 6 Range of health services needed
Models of delivery
With such a burden of physical disability in the population, adequate and equitable delivery of health care to the disabled population is clearly a major ogistical problem. Services provided in most countries are patchy, fragmented, and inadequate. So what service delivery options are available?
With increasing pressure on acute beds and the trend towards community-based services, one can argue that rehabilitation services should be outside acute facilities, but ready to assist in moving patients to definitive rehabilitation to meet their requirements. Some beds are required for specialized rehabilitation and certainly some will be required in the future for convalescence, as the acute facilities push patients out with increasing speed. Thus rehabilitation in the acute facility will be aimed at getting patients to the starting point where more definitive rehabilitation can take place and will by necessity be short-term and impairment driven rather than activity or participation focused. Therefore acute rehabilitation in community settings is possible and there will be a focus on more inpatient- and outpatient-based rehabilitation.
The traditional model of managing people with disabilities through the hospital outpatient clinic is unsatisfactory for a number of reasons. There is often little continuity of care, with follow-up visits supervised by junior medical staff with little knowledge of the individual or of the disability. The numbers of people involved means that little time can be spent with any one person and the reappointment intervals tend to be long. This model provides little or no involvement by members of the rehabilitation team who were formally involved in the inpatient episode. It may have some relevance in certain conditions such as multiple sclerosis, Parkinson’s disease, or chronic fatigue syndrome, but in general fails to meet the principles of service delivery outlined above and is widely known to be an unsatisfactory experience for both the doctor and disabled person.
Specific clinics and activities have recently been developed for managing certain long-term conditions, such as multiple sclerosis, epilepsy, Parkinson’s disease, or inflammatory joint disease. In addition, back pain services have been set up and these clinics have the advantage of providing an expert multidisciplinary approach, which is familiar with the specific problems of that disorder. The team can supply information and counselling support and can act as a focus for self-help groups. Thus the clinic can provide a social as well as a medical function, and can also facilitate research. However, there are logistical problems of arranging a large number of such clinics to cover the whole range of disabilities and the possibility of ignoring rarer conditions. There is also the real danger of staff boredom and the problem of individuals seeing others with the same condition who are worse than themselves, with the consequent psychological stress both for them and their carers.
Community rehabilitation teams
Follow-up from the acute hospital-based rehabilitation team is essential for many people with significant disabilities to provide continuity of support and access to appropriate health resources after discharge. A community team can still work in a multi- or interdisciplinary manner in the same way as the acute rehabilitation team, but tends to concentrate more on changing abilities and participation than on the relationship between impairments and abilities. A team is effective for a population of about 120 000 (Royal College of Physicians 1997). Teams may be peripatetic, based in health or community centres, or in community hospitals. Because regular review for large numbers of people would quickly place an unacceptable demand on the service, some teams operate an open-access service for self-referral which can counteract this problem. A self-referral review system can mean that preventable complications arise unrecognized by the disabled person and may only provide a health orientation to problems, potentially ignoring important social and vocational aspects of disability. There are examples of broader-based multidisciplinary teams with input from social services, employment, and other voluntary and statutory bodies. This requires a great deal of co-ordination and co-operation between different statutory and funding agencies which, at least within the present United Kingdom system, is difficult to achieve.
Primary care teams
A typical group general practice in the United Kingdom has a population of around 10 000. The numbers of disabled people are thus reduced within a primary care practice to a reasonable level. It is possible for the primary care team to keep a watching brief on the disabled people and make referrals to a local hospital-based team as appropriate. However, many disabilities are quite rare. For example, a general practitioner is likely to see only one new person with multiple sclerosis every 20 years. The level of expertise within the primary care team is thus limited and important points of management may be missed and questions left unanswered. It is likely that a system dependent on a primary care team will produce a rather unco-ordinated and fragmented service. In order to circumvent this problem the primary care team could be supported by visiting members of a specialist rehabilitation team. In one project a rehabilitation consultant and physiotherapist attended meetings of the primary care team to discuss management issues for people with Parkinson’s disease. Such projects have potential but need further evaluation.
Disabled people, particularly those with severe and wide-ranging disabilities, will need a complex array of health and social services. The concept of case management has been developed as a way of assisting disabled people with the co-ordination of the necessary professional staff. Case management can include:
simple co-ordination within a single agency
co-ordination across agency boundaries
service brokerage in which the case manager negotiates with the key agencies on the client’s behalf
budget-holding responsibility where services can be purchased on behalf of the client from statutory bodies or other voluntary or private agencies.
There have been very few controlled studies of the efficacy of case management, but it is widely practised within the United States and Canada, and probably provides a better and more coherent service, particularly for those who have a degree of cognitive impairment and are unable to find their own way through the maze of services (Beardshaw and Towell 1990; Shepherd 1990).
Links with other agencies
Health-based rehabilitation goes hand-in-hand with social and vocational rehabilitation and services need both formal and informal means to break down the artificial barriers between the participating agencies. Cross representation is neccessary at both the strategic and operational levels and disabled people need not only to be involved, but should also lead when and where it is appropriate. There is no single preferred model to suit every location and each will depend on the local facilities and assets of the participating individuals. However, all new services should take into account the living options principles (Fiedler and Twitchin 1990) (described in Table 7), and the views and advice of users’ and disabled people’s groups on disabled living should have a high priority (Fig. 6).
Table 7 Living Options Working Party key principles for disabled people
Fig. 6 The essential elements of a comprehensive service system for people with severe physical and sensory disabilities.
Joint commissioning of services for physical disability and rehabilitation works well and is the way forward. The distinction between the medical and social models of rehabilitation is probably not helpful and only serves to create barriers. Disabled people do not care who supplies or funds a service, just as long as it is provided, is timely and appropriate, and is in the right quantity. Service philosophies should be just as applicable in health-based or social rehabilitation settings, as long as the objectives of the rehabilitation intervention are clear. For instance if the aim is to achieve re-employment after injury, the individual will need to be fit to go to work, have the physical means to get there, have the mental and physical capacity to do the job, and have the energy and good health to continue to attend on a regular basis thereafter. The discipline of travelling to and from work will need to be (re)learnt, as will the social skills to get on with colleagues, employers, and so on. This calls for a whole range of skills and a potential need for assistance and services. The best way to describe them is by means of the following case history.
Case history 2
JB is a 23-year-old man who was involved in a road traffic accident in 1995. He suffered a massive brain injury and was admitted to hospital with a Glasgow Coma Score of 5 (Teasdale and Jennett 1974). He was a right-handed man who suffered right frontoparietal lobe damage and a haematoma was evacuated. Following this, he developed intracranial hypertension and subsequently post-traumatic epilepsy. He had a left hemiplegia, left hemiaesthesia, a left homonynous hemianopia, visuospatial neglect, and a significant constructional dyspraxia and agnosia. He was resuscitated and transferred to rehabilitation.
He stayed in hospital for about 4 months and during that time made a remarkable physical recovery. He developed some increased tone on the left side, but had a good return of power, such that he could walk up- and downstairs unaided. He was quiet and withdrawn, but not clinically depressed, and had undergone a complete personality change. He had been an outgoing carefree man, who was married with a 2-year-old daughter. His dyspraxia and inertia were very evident and, despite a good physical recovery, he was unable to return to work. He would sit at home all day and while he admitted to being very frustrated, he did not have the means to express this.
He attended a post-head injury day therapy course and, although he enjoyed it, he did not really progress. His wife left him, as she found it difficult living with a man, who ‘was not the man she married’. He went to live with his parents, and has been with them ever since. Shortly afterwards, he presented with grand mal epileptic fits and has become quite agoraphobic. He will not go out without his mother and develops regular panic attacks if he is in an open space. As a result, he has lost all contact with his friends and presents as a lonely man who is terrified of having a fit in public. He is on large doses of a single anticonvulsant, from which he has side-effects and occasionally is incontinent when he cannot find a toilet in time.
He is now reviewed jointly by the regional neurobehavioural unit and local rehabilitation centre, and his anticonvulsant medication has now been altered to two drugs in less toxic doses. He has undergone a period of inpatient rehabilitation in the neurobehavioural unit and a strategy for managing his agoraphobia has been started. During that time the staff from the physical rehabilitation unit have eliminated his incontinence and his fits are under better control. He still needs a lot of help and a claim for damages has been started. Unfortunately, there is a liability dispute, and this is producing a negative effect on his ability to move on. Financially, he is supported by his parents, but they are a little overprotective. He has thus rejected going out with social groups and has been only an intermittent attender at the local Headway House. If he gains independent financial support, it is planned to appoint a case manager who will employ some companions for him. With time and a consistent approach, it is hoped to get him out and to allow him to live eventually more independently of his parents. He will need continued help from the local rehabilitation unit, who will take advice from the regional neurobehavioural unit to access local services. He is unlikely to return to paid employment, but, in the first instance, the aim will be to get him to socialize more and just to get him out of his house. The local social services day centre has been offered by his social worker, who has co-operated closely with health professionals in trying to work with JB and his parents. The prognosis for independent living is not particularly favourable and it is possible that care services will be required when his parents are not in a position to look after him in the future.
Who is rehabilitation for?
As health services become better focused on effectiveness and care plans, they have looked more closely at where rehabilitation should be directed. The decision to accept people for inpatient and outpatient rehabilitation has been rather haphazard, without any objective assessment of therapeutic goals and without reference to explicit policies. Decisions about discharge also tend to be vague (Hass 1988). To make best use of resources, four questions need to be asked when assessing people for rehabilitation. They are more obvious when a patient is referred to a hospital rehabilitation programme, for example a stroke unit, but are equally applicable to outpatient or community settings.
Is the rehabilitation resource (e.g. a hospital unit) designed for the person’s needs?
What is the effectiveness of rehabilitation?
What is the benefit of rehabilitation?
What will happen without rehabilitation?
Is the rehabilitation resource designed for the client’s needs?
Clinical effectiveness and defined admission criteria to rehabilitation units have clarified the work of these facilities, but are more prevalent in hospital-based institutions than in community organizations (Royal College of Physicians 1997). Specific operational policies for hospital- and community-based rehabilitation programmes can be used when selecting patients for rehabilitation and again when deciding whether to continue the programme; for example, if the needs of a new referral have to be judged against those of someone else who is continuing to make gains during a prolonged inpatient rehabilitation episode. Difficulties most often arise when there are multiple disabilities involving combinations of physical, behavioural, and cognitive problems extending beyond the expertise of a specific rehabilitation team. The occurrence of this combination, for instance in head injury and schizophrenia, creates a strong argument for the existence of specialized units for such conditions. Units lacking the required expertise will be incapable of meeting all the client’s needs and such people can only disrupt the efficiency and confidence of staff treating other people on the unit. Where a new area of need is defined, a unit must take a conscious decision to adapt its policies to accommodate it or, where necessary, to add its voice to demands for the development of new facilities.
One factor distinguishing the operational policies of different units is the pace or intensity of rehabilitation. Intensive programmes are not always required, even if they are available. Physical fitness and behavioural factors, such as attention span, influence an individual’s ability to benefit from intensive therapy programmes. Elderly people and those with severe multiple disabilities sometimes benefit from a relatively slow pace of rehabilitation and the association with concomitant conditions distinguishes the rehabilitation pace for older and younger people above everything else. In establishing a unit’s case mix, the needs of the rehabilitation staff must also be accommodated as they must feel confident and expert. Ongoing training of key staff is therefore essential in order for that expertise to be diffused downwards.
The geographical remoteness of regional units (spinal cord injury, brain injury) from where disabled people live show that the organization of services is critical for successful integration with other non-health services. However, the advantages of an intensive programme based in a regional centre to some people are outweighed by any remoteness from home. There are still major disadvantages in that there is limited access to the family, ignorance of the hospital’s system of working, and difficulties in setting up appropriate post-discharge plans. People from outlying areas are sometimes impressed at first by the expertise of the large centre and then all the more disappointed by its inability to achieve outcomes which are relevant to the disabled person’s own community. Nevertheless, it is impossible to mirror all the services in each district and regional organization along supradistrict lines will always be necessary (Table 6).
As rehabilitation is heterogeneous, it is necessary for some units to specialize in certain areas. Therefore it may be difficult to compare one unit with another, and the British Society of Rehabilitation Medicine has recently published some clinical standards to cover what the basic standards the public can expect of inpatient rehabilitation (Turner-Stokes 1999). Thus peer review of rehabilitation units will be possible, albeit at a simple level at the moment. For instance, each unit should at least document on admission and discharge an outcome measure to reflect the patient’s individual rehabilitation programme. This is a straightforward start and is achievable and easy enough to ensure full participation by all.
Effectiveness of rehabilitation
When a referral is appropriate, it is necessary to ask how and in what aspects the client will benefit from rehabilitation. There is now good data on clinical effectiveness in rehabilitation (Stroke nits Trialists Collaboration 1997). Stroke units save lives and reduce disability (Roth et al. 1998). There is an improvement in the abilities and participation of people undergoing stroke rehabilitation, even where there is not much change in the impairment (Wade et al. 1985). Much work has been done on the relationship between specific medical factors and outcome. A number of medical variables have been shown to predict poor outcomes—for example, in stroke (Bernspang et al. 1987). Such evidence from group studies is of limited value in predicting the rehabilitation potential of individuals. There are, however, neurological deficits which are intrinsically obstructive to the rehabilitation process. For example, a receptive aphasia limits the potential for verbally based education and there is evidence that high-order perceptual deficits following right hemisphere damage are associated with poorer outcomes (Stroke Units Trialists Collaboration 1997). Similarly, other physical deficits also disrupt the rehabilitation process and poor cardiac/respiratory reserve, loss of limb, obesity, and skin and joint problems are some examples. The ability to learn is crucial for rehabilitation potential (Tondat Carter et al. 1988), but it is often difficult to pick this up and the methods are not yet well developed. A number of studies, which show the benefit of rehabilitation and they are listed in Table 8.
Table 8 Current evidence of effectiveness of rehabilitation in traumatic brain injury
In the light of this, it is possible to conclude that rehabilitation:
reduces complications (e.g. the physical effects of neurological injury, immobility, etc.)
optimizes the physical and social functioning of patients
identifies cognitive and emotional complications of traumatic brain injury, even in the absence of physical sequelae
improves the chances of living independently at home and returning to work
concentrates therapy—more therapy input is associated with shorter hospital stays and improved outcomes (Shiel et al. 1999).
Benefits of dedicated rehabilitation
There is now considerable evidence that the process described above produces real benefits and improved outcomes. Reports of stroke rehabilitation trials (Indrevidavik et al. 1991) show that outcome is better for patients cared for in a specialist stroke unit than those cared for in a general medical ward. Those in stroke units were less likely to die and less likely to be living in institutions a year after the stroke. Stroke units also improved functional outcome following an intensive period of early rehabilitation (Strand et al. 1985; Indrevidavik et al. 1991). One large-scale overview of stroke rehabilitation in 3717 patients demonstrated that focused rehabilitation can improve functional performance (Ottenbacher and Jannell 1993). The best results were obtained with younger patients and those receiving rehabilitation early after their stroke.
Similar results, although with smaller patient numbers, have been demonstrated for rehabilitation after spinal cord and head injury (Yarkoney et al. 1987; Hall and Cope 1995). Most of these studies confirm the value of two different aspects of rehabilitation. Firstly, most studies documented improvements in functional outcome and speed of attaining such outcome. Secondly, disabled people going through rehabilitation units have less unnecessary complications. There are less unnecessary physical problems, such as those associated with spasticity, contractures, and pressure sores and less unnecessary psychological problems, such as untreated depression. There is clear evidence that an intensive period of rehabilitation after an acute event, such as head injury or spinal cord injury, produces clear, short-term functional gains (Cope and Hall 1982). However, there is also evidence that short-term gains are lost unless longer-term support is available (Garraway et al. 1980). Thus longer-term contact with the disabled person is important in order to provide rehabilitation until natural recovery is complete and to prevent the later development of unnecessary complications. Assessment of care costs should allow for continuing rehabilitation support.
There are clear benefits from early rehabilitation, but even if an individual has not received rehabilitation in the early stages after trauma, later rehabilitation should still not be considered a waste of time. Tuel and Presty (1992) demonstrated that just over half of 49 people with severe head injury seen by a rehabilitation team at least a year after the injury improved function regardless of age or injury severity. Benefit can be achieved in the alleviation of psychological, emotional, and behavioural problems. Eames and Wood (1985) showed a marked improvement in severe behavioural problems several years after severe head injury. Roth et al. (1998) showed that rehabilitation after stroke produced improvements in abilities and participation (independent living in this case), even when there was no sgnificant change in the severity of the impairment. It should also be considered that advantages can follow from access to rehabilitation for people with longer-term deteriorating conditons, such as multiple sclerosis. Rehabilitation has been shown not only to be efficacious (Larocca and Kalb 1992; Kidd et al. 1995) but also to be cost-effective (Feigenson and Scheinberg 1981). Once again, there is evidence that co-ordinated imput reduces physical and psychological problems and results in fewer unnecessary hospital admissions.
While the process of rehabilitation is clearly beneficial for the individual, it is also beneficial for the health service and society as a whole. Less unnecessary hospital admissions, shorter stays, and fewer physical and psychological complications all lead to cost reduction and a better service. More importantly, there is a reduction in hospital readmissions following rehabilitation for acute illness/trauma. Work in the United States has shown that a co-ordinated rehabilitation programme can lead to a better chance of returning to work (Ben-Yishay et al. 1987; Wehman et al. 1995) and such an outcome is clearly preferable to the individual and the family, and for the economy as a whole. Increased functional independence will lead to reduced care needs in the community. There can be significant long-term financial savings, which can more than offset the cost of a patient’s initial rehabilitation, especially in traumatic brain injury where the expectation of life may be long lasting (Aronow 1987).
The process of interdisciplinary rehabilitation improves functional outcomes and reduces unnecessary complications. Research reveals that it is effective, but evaluation of its cost-effectiveness still needs further work. There are many indications of the latter, but we need to know which aspects of rehabilitation consistently produce the best outcome in relation to cost. The dilemma is that everyone knows that rehabilitation is vital, but new methodologies need to identify its true value. Randomized control trials are important, but may miss some of the most valuable and important observations of rehabilitation. Advantages can follow from access to rehabilitation for people with longer-term deteriorating conditions, such as multiple sclerosis.
What happens if rehabilitation does not take place?
A person’s rehabilitation potential cannot be considered in isolation from what would have been the outcome without rehabilitation. Has the rehabilitation programme made the difference or has it all been left to chance? The natural history of the impairment and the consequent disabilities and disadvantages play a major role in the eventual outcome following rehabilitation. Some conditions recover spontaneously and early intervention may give the false impression that therapy has been efficacious (Dombovy et al. 1987; Legh Smith et al. 1987). Conversely, early intervention may be associated with an improved outcome where full recovery does not occur (Oakes et al. 1990).
The risk of recurrence or early death must be considered. In some cases, this is inevitable and, while the type of rehabilitation offered for the management of a cord lesion due to metastatic spinal disease is necessarily different from that of cord trauma, people with the former do nevertheless need rehabilitative programmes. Social and other premorbid factors (e.g. pre-existing personality, psychiatric, or medical disorders) may dominate the situation in such a way that the proposed rehabilitation input could only have a negligible effect on outcome. It is sometimes clear that the level of disadvantage (e.g. dependency) would be roughly the same with or without rehabilitation. For someone with a spouse/partner willing to act as carer, rehabilitation might make the difference between home life and institutional care, whereas a similar person with no family might be destined for a nursing home even after intensive rehabilitation. Giving priority to people with a wider range of possible outcomes may seem logical but is ethically hazardous since it leads to a ‘what if’ suggestion that some categories (e.g. ‘old’ single men without capital or income) are inherently less worthy of rehabilitation than others in more fortunate circumstances. To be effective, the rehabilitation plan must be tailored to individual needs, to enable people where possible to achieve or resume a lifestyle quality that meets their aspirations within the resources available.
The lives of people with persisting disabilities are also enhanced by rehabilitation but, more importantly, the consequence of them not having rehabilitation is to reduce their independent functioning and quality of life (Hall and Cope 1995). So what happens to people with complex physical disabilities in the absence of specialized planned rehabilitation? In the immediate period following injury, it is known that the simple act of transferring a brain injured patient from a busy surgical or neurosurgical ward to the calmer, quieter atmosphere of a rehabilitation ward has a therapeutic effect in itself and improvements in attention, irritability, and cognition are observed (McLellan 1985). In addition, patients on general wards are often inappropriately sedated during the irritable phase of their recovery and their behaviour is more difficult to manage in busy surgical wards, where the time and attention of the nursing staff must of necessity be devoted to other patients with urgent surgical problems. As a result, inappropriate referrals are made to psychiatric and other services. Acute general wards are not conducive to the practice of multiprofessional rehabilitation for patients with complex needs. Staff do not have the time, the expertise, or the resources to meet those needs properly and the net effect is to arrange discharge as quickly as possible. Many correctable problems, such as nutrition, swallowing, mobility, and equipment issues, are not addressed and the focus is on treating the impairment (e.g. wound healing) and freeing the bed for the next patient. In the absence of recognized rehabilitation, acute beds are blocked. Therefore patients are denied access to acute wards if their early discharge cannot be guaranteed. In the post-acute phase, all the problems of physical inactivity are seen in the absence of rehabilitation. While health services have a statutory duty to provide rehabilitation services to meet the health needs of patients, rehabilitation services and expertise is still very patchy (Anonymous 1990; Association of British Neurologists 1992). Therefore patients have very different experiences in the post-acute phase and in subsequent rehabilitation. Successful social integration depends not only on this but on many other factors, and some of the problems that arise in the absence of early rehabilitation are listed in Box 3.
Immobility including pressure sores, spasticity, contractures, and osteoporosis
Bladder and bowel problems:
Mood and behavioural problems
Systemic illness from a variety of causes, but in particular resulting from urinary tract and chest infections
Complications of underlying condition
A lack of planned rehabilitation results in treatment activity being uncoordinated and inefficient, but this does not necessarily mean that the necessary services are not available. Treatments become ineffective either because the patient is not ready for them or because other things are not in place to ensure their success. Inappropriate disability equipment is provided and often may go unused, thereby cluttering up a household (Chamberlain 1988). Inappropriate use of equipment often leads to dissatisfaction and frustration aimed either at the person with the disability or the provider. In some cases, all that is required is a proper explanation of how to use a particular device or piece of equipment properly.
Without formal rehabilitation disabled people and their carers do not have the opportunity for gaining the necessary knowledge and information for independent living skills, which is vital for both. Later on, the full consequences of a lack of rehabilitation become apparent. As the disabled person moves into living in the community, the lack of follow-up leads to preventable health problems and social isolation. Carers become exhausted by the burden of care and many domestic situations break down. The first signs are an increase in the number of urgent calls to general practitioners or social workers, emergency admissions arranged to hospital, and eventually placements are made for residential or nursing home care (Edwards 1990). Review of those residents revealed in many cases conditions which could easily be managed in the community, given support (Martin and White 1988) and part of this package is the need to provide suitable daily care arrangements and opportunities for respite care. Skin breakdown is the most common, followed by urinary tract infections, pulmonary infections, and contractures (Shangraw et al. 1988). Inadequate personal assistance also leads to extended hospital stays, threats to safety, poor nutrition, and poor personal hygiene. The most significant feature of poor care is a total reliance on the family alone for assistance, the common adverse affects including burnout, family role changes, and economic strain (BSRM 1993).
The consequences of immobility have a profound effect on physiology, health, and social well being. Even in the short term, loss of bone mineral content is observed (Krolner and Toft 1983). Sensory deprivation also occurs, and Leidermann et al. (1958) show that people confined to bed for prolonged periods suffer from disorientation, confusion, and delusions from decreased kinaesthetic, auditory, visual, and social stimulation. Sleep patterns change and loss of sleep impairs bladder control. In parkinsonian and other patients, memory and learning deteriorate (Parkes 1985) and this may occur to such an extent that irreversible dementia has been reported (Kelly and Feigenbaum 1982). Sleep is important not only for performance, but for healing of the impairment and conditions such as pressure sores as well.
Changes occur in muscle function and atrophy is seen by as much as 12 per cent in calf muscle bulk and 26 per cent in strength (Le Blanc et al. 1987), especially in antigravity muscles (Le Blanc et al. 1988). Neurological complications can occur in the form of compressive neuropathies of the lateral popliteal nerve at the head of the fibula and the ulnar nerve at the elbow as sites of particular risk. Also described is a devastating generalized sensory motor neuropathy seen in desperately ill people requiring intensive care treatment, characterized by generalized weakness, in which recovery may be poor (Warlow 1991). Changes also occur in the cardiovascular system with a greater likelihood of orthostatic hypotension (Greenleaf et al. 1985; Harper and Lyles 1988) which may take several months of ambulation to be corrected (Sandler et al. 1988). Deep vein thrombosis is a serious consequence of immobility and Warlow et al. (1976) identified an incidence of 50 per cent in a hemiparetic leg after stroke. The combination of stasis and vessel wall injury from abnormal posture and pressure—and the hypercoagulability that exists in conditions such as myocardial infarction, stroke, or surgery—is a powerful trigger for thrombogenesis (Thomas 1985). Prevention of formation and of embolization by adequate mobilization of the limb in a rehabilitation setting is necessary and early efficient mobilization is enhanced by an effective rehabilitation programme.
Pressure sores and contracture formation are two of the major consequences of a lack of rehabilitation. Rehabilitation experience drives general medical and nursing staff to develop pressure sore policies and quality standards are now a Department of Health recommendation (Department of Health 1993). While the creation of policies has raised standards, it has also opened up National Health Service (NHS) Trusts to compensation claims in the event of patients developing sores. Contractures themselves are not only painful but lead to abnormal positioning and a greatly increased risk of pressure sore development. Yarkony and Sahgal (1987) found that contractures occurred in 84 per cent of patients requiring inpatient rehabilitation after traumatic brain injury and the number of contractures increased with coma duration. Most affected are the hips (81 per cent), shoulders (76 per cent), ankles (76 per cent), and elbows (44 per cent). These take time to develop and permanent limb deformity is often the consequence. Since this may take 2 to 3 years to develop (Blasier and Left 1989) there is time to organize their treatment.
Another major implication of immobility is the development of osteoporosis. The resultant loss of bone mass in immobility has been well studied in the context of paralysis, in weightlessness in space, and in people on bedrest (Albright et al. 1941; Krolner and Toft 1983; Stupakov et al. 1989). There is an increase in calcium excretion and breakdown products of bone collagen, which reach a peak between 3 and 6 months after injury. Even the resumption of exercise does not always counteract the loss of bone seen following bedrest as it is weight bearing that is important. Therefore people who may exercise hard need to spend time putting weight through their lower limbs and spine (Jessekutz et al. 1966; Schoutens et al. 1989). Hormone replacement and the advice on smoking and dietary intake of calcium appear to take second place in these people to the need to bear weight to prevent osteoporotic hip fractures (Law et al. 1991).
Most people become malnourished after major injury and some are frankly cachectic. The reasons for this are quite complex, but relate to poor feeding techniques on acute wards and a lack of awareness by staff of the metabolic needs of the recovering patient (Clifton et al. 1984; Gaddisseux et al. 1984). In addition, nurses do not give sufficient time to feed patients orally. Gisel and Patrick (1988) found that children with cerebral palsy took up to 12 times longer than normal children to chew pureed food and 15 times longer to chew solid food, and there is simply insufficient time on many acute wards for adequate feeding to occur. To confirm this, there is good evidence of increased nutritional requirements for people following brain injury, particularly those with very low Glasgow Coma Scale scores of 4 or 5 out of 15 (Robertson et al. 1984). Requirements increased during the initial 28 days and there was a correlation between proper nutritional support and recovery in severe traumatic brain injury (Young et al. 1992) with quicker earlier recovery in Glasgow Outcome Scale scores at 3 months.
The standard way of alternative feeding is now to switch as early as possible to fine-bore percutaneous endoscopy gastrostomy tube feeding. This method is beneficial (Wicks et al. 1992) and is generally more acceptable to patients and families (Llaneza et al. 1988). It is now the preferred method of feeding and many investigations support its superiority over other techniques (Himal and Schumacher 1987; Larson et al. 1987). Nutrients can either be given continually or intermittently by bolus feeding, and both have advantages. Certainly the latter can be easily incorporated into an active rehabilitation programme, and recovery of swallowing function can be easily assessed by videofluoroscopy (Splaingard et al. 1988). In addition, patients can still be treated for any communication disorders which would otherwise be inhibited by nasogastric tubing. This in itself highlights one of the benefits of rehabilitation to patients, which would not otherwise occur in its absence. Initially nasogastric tubes may be fitted on acute wards, but they are not now acceptable as longer-term solutions as they take a considerable time to achieve good nutrition and lead to the potential for increased irritability among confused patients, such as those following a traumatic brain injury. In addition, recovery of oral feeding may be inhibited by the presence of nasogastric tubes, and aspiration and oesophageal ulceration can occur. They are also cosmetically unpleasant for patients and their families, and many people find them very uncomfortable.
One of the main tasks in the rehabilitation of physically disabled people is the assessment and treatment of swallowing disorders. This is generally undertaken by speech and language therapists, in conjunction with the rest of the rehabilitation team, for it is important to rule out preventable and treatable causes such as those produced by the side-effects of medication. With modern techniques of imaging and early correction of the nutritional deficit by percutaneous endoscopy gastrostomy tube, there is reduced gastro-oesophageal regurgitation and thus less aspiration pneumonia. The latter is associated with a significant mortality and morbidity (Kiver et al. 1984), and in a rehabilitation setting the education of carers by staff leads to a better understanding of the importance of nutrition and its lack.
Bladder and bowel problems
Another feature of rehabilitation is attention to constipation. Disabled people who do not receive formal specialist rehabilitation have a higher incidence of this condition and it is seen in those living in the community or in acute general wards. An audit of the North Staffordshire Rehabilitation Centre found severe colonic loading or faecal impaction in 35 per cent of patients admitted (Ward 1996). This is also found in spinal cord injured people (Andrews and Greenwood 1993). Chronic constipation is associated with, among other things, confusional states, pain, increased spasticity, and muscle spasm. It is a quality indicator in patient care and is thus indirectly associated with an increased incidence of problems such as pressure sores and contractures.
One of the considerations of a rehabilitation programme on constipation must also be to prevent the incidence of spurious diarrhoea. This still goes unrecognized in primary and secondary health care, and a lack of proper assessment causes antidiarrhoeal agents to be given when the patient requires bowel clearance instead. Similarly, urinary incontinence can be badly managed in the neurologically impaired person and there is often a lack of overall control and co-ordination in its prevention and management. The neurologenic bladder is not very well understood by many generalists and urological departments tend to concentrate, by sheer weight of numbers, on patients with mechanical bladder problems rather than those with neurological deficits. Real expertise has developed in this area in rehabilitation units.
Urinary and faecal incontinence are associated with skin problems and the development of pressure sores (Moolten 1972). If left untreated, both can be extremely handicapping, and they are two of the most common causes of disabled people remaining housebound. People describe planning their journeys around toilet facilities in order that they will not be ‘caught short’. There is also inappropriate use of continence aids and equipment, and this is a crucial area for rehabilitation expertise.
Many people with communication disorders following neurological damage are isolated, misunderstood, and actively shunned. The rehabilitation process allows a better awareness of communication problems and helps patients, their families, and professionals to understand the importance of integrating sufferers back into society (Lincoln et al. 1984). The use of communication aids and other equipment, and the time given to understand communication disorders and individual patient’s needs are important rehabilitation activities. Following a stroke, 35 per cent of patients have a communication problem and 15 per cent of these have a language difficulty. Following traumatic brain injury, half of all patients have communication difficulties which are, to a greater or lesser extent, involved with cognitive disturbance. It is very important to dissociate cognitive and communication problems, as their treatment may be quite different and assessment of one may be impossible without prior treatment of the other. Patients may present with good non-verbal communication skills yet have quite profound difficulties in understanding others and in expressing themselves. This leads to much confusion and can lead to profound mood and behavioural abnormalities.
Clinical depression is actively treated in the rehabilitation world and there is a great general awareness of its importance in producing well-adjusted patients. Similarly, the management of other mood disorders and of behavioural problems significantly affects outcome, even in conditions not affecting the brain. The successful management of pain, loss of limb, and chronic conditions, such as locomotor disorders, depends on the psychological well being of patients and their families. Assessment of life functioning is being developed in all these conditions, and outcome measures such as the General Health Questionnaire and the Life Satisfaction and Sickness Impact Profile are among those in common usage. Clinical psychologists are useful not only in the management of physically disabled people, but also in the prevention of these disorders which affect the rehabilitation process. The use of antidepressant medication has had a beneficial effect in rehabilitation units and, while the evidence of their benefit is variable, they are now quite safe drugs. The potential damage of missing a treatable depression appears to outweigh the risks of antidepressant medication in post-acute rehabilitation, particularly in people with traumatic and non-traumatic brain injury (Farm et al. 1995).
As with the management of depression, the management of chronic pain is crucial to the aim of producing a well-adjusted person, despite the limitations of his or her disability. Chronic pain is very common, occurring in people disabled by both neurological and locomotor disorders. For instance, shoulder pain occurs in up to 70 per cent of patients during the first year following a stroke and 25 per cent of patients develop the shoulder–hand syndrome, with or without a reflex sympathetic dystrophy (Van Ouwenaller et al. 1986). The management of pain is a multidisciplinary responsibility and combines a number of separate activities. There is a balance between analgesic medication, physical relief of pain (whether by therapeutic modalities or alteration of sensory nerve function), and by psychological means. It is important to achieve the right expectations and many patients with chronic pain have been mismanaged in the acute or early stages of their problem. The treatment of pain is an important facet of rehabilitation and should be instituted early. The use of transcutaneous electrical nerve stimulation, acupuncture, and complementary medicine may be beneficial to patients, but all concerned in the process should understand the rehabilitation goals. Pain is more frequent after non-dominant than dominant hemisphere stroke, and disorders of tone can also produce pain (Shahani et al. 1981; Poulin de Courval et al. 1990; Ko-Ko and Ward 1997). Although sensory neglect is found in non-dominant hemisphere stroke, it is itself not associated with pain.
The presence of caries resulting from poor oral hygiene or damage to teeth is directly associated with ill health and distant infection. Not only is it painful to eat, but certain foods cause further pain. Even when swallowing and chewing are normal, dental caries are more common in neurologically disabled people and those with a learning disability (Oreland et al. 1989). Injuries to the maxilla and to the brain cause malocclusion of teeth which can give rise to pain and headaches and lead to gum hyperplasia. The best known cause of this is the 1 per cent association with the anticonvulsant phenytoin (Grant et al. 1988). Oral hygiene, although time-consuming, should be strenuously managed. The presence of caries makes the fitting of foreign bodies, such as ventriculoperitoneal shunts, more risky, and there is a real association with endocarditis. Any potential infection will increase morbidity and may affect mortality, although the data for this are not robust. Certainly an important factor in rehabilitation is accessibility to a dentist.
One of the most restrictive complications of severe injury or surgery is the development of ectopic bone formation, which is most commonly recognized under the term heterotopic ossification. This is a condition in which mature laminar bone is formed in tissues that do not normally ossify, such as in muscles and ligaments around joints. It should not be confused with simple calcification of soft tissues (Damanski 1961). The cause of heterotopic ossification is mainly traumatic or neurogenic, or is due to a rare autosomal dominant congenital condition called myositis ossificans progressiva in which there is progressive ossification of muscles from early infancy, extending to all muscle groups. Traumatic heterotopic ossification is seen following musculoskeletal injury, such as after total hip arthroplasty, internal fixation of pelvic and femoral fractures, and following severe head injury, spinal cord injuries, and other disabling neurological insults. It affects the proximal limbs and joints with radiological evolution of heterotopic bone occurring over a 6-month period in the majority of patients (Garland 1991). Even in the absence of limb fractures, the brain injury itself can cause the development of heterotopic ossification and brain injured patients exhibit an abundant healing response to fractures leading to a significantly increased union (Spencer 1987).
Improvements in survival have led to better identification of its incidence. Spinal injured people tend only to develop this complication distal to the level of the cord injury; the incidence is 20 to 30 per cent of cases. However, limitation of joint movement is restricted to an incidence of 18 to 35 per cent (Stover et al. 1991) compared with an incidence following closed head injury of 10 to 20 per cent. Ten per cent of brain injured patients have a severe restriction of joint motion (Stover et al. 1991). Following total hip arthroplasty, heterotopic ossification is clinically significant in 2 to 7 per cent (Brooker et al. 1973; Kjaersgaard-Anderson and Ritter 1991) and as much as 15 per cent can be found following internal fixation of acetabular fractures (McLaren 1990). The male-to-female ratio is 2:1, and age over 60 years and previous formation of heterotopic ossification are established risk factors following total hip arthroplasty.
The most sensitive investigation of heterotopic ossification is the isotope bone scan, which becomes positive about 3 weeks after the injury. Serum alkaline phosphatase rises acutely and is still significantly raised up to 20 weeks after the initial injury (Wittenberg et al. 1992). The administration of anti-inflammatory drugs prior to and after hip replacement is probably protective. Intractable limb spasticity in neurologically impaired people has a direct effect on functional outcome and the possibility of recurrence of heterotopic ossification after excision treatment. Joint trauma or surgical repair of a fracture greatly increases its risk, as does a pressure sore around a proximal joint (Spencer 1987) . In spinal cord injuries, Frankel type A and B tetraplegics were more likely to have heterotopic ossification than paraplegics. Preventative measures with non-steroidal anti-inflammatory drugs and diphosphonate drugs are indicated in at-risk patients, but there is some controversy about the latter, as Thomas and Amstutz (1985) found the incidence of heterotopic ossification to be slightly higher in patients who had received diphosphonates following hip replacement. However, the general consensus is that they are useful and should be taken1 month before hip replacement and continued 3 months postoperatively. Similarly, they should be continued for 3 months after spinal or traumatic brain injury. Non-steroidal anti-inflammatory drugs are cheap and also effective, but cannot prevent the development of severe heterotopic ossification when started after the fifth day after surgery or injury.
Treatment of established heterotopic ossification should incorporate physiotherapy to mobilize the joints slowly and carefully, but overzealous treatment, particularly around the elbow joint, can itself lead to heterotopic ossification (Wilson 1974). Passive joint mobilization helps to maintain or increase joint mobility and can be more dynamic in neurologically impaired people. Surgery is of value to mature heterotopic bone formation, but can complicate the impairment if it is performed too early. Surgeons should wait until the ectopic bone has matured; serum alkaline phosphatase levels and plain radiographs are not particularly good indicators of this. The uptake from isotope bone scans decreases in proportion to the relative maturity of the new bone and it has been estimated that a 14-month period must elapse before the bone is sufficiently mature to allow surgical excision without significant recurrence of the problem. The difficulty is that people, particularly those with traumatic brain or spinal injuries, have often lost the opportunity for recovery of function in order to allow the bone to be dealt with. This has significant impact on outcome and can often delay good outcomes from a rehabilitation programme for up to 2 years. The importance of prophylaxis should be recognized and studies are now required to quantify the impact on activities of daily living after the development of heterotopic ossification.
Loss of limb
The United Kingdom has a long tradition in amputee rehabilitation, which first started with the artificial limb and appliance services. After the McColl Report, it was recognized that provision of limb-fitting and wheelchair services needed a wider approach to rehabilitation and the disablement services agency was an interim development to promote general rehabilitation for amputees and wheelchair users (McColl 1986). Services have been devolved to local trust level, although limb fitting itself has been organized on a regional basis. There is no doubt that there has been a distinct improvement in service and in artificial limb quality and that the total needs of amputees are being better met, one of which is the provision of an artificial limb.
Loss of limb is a devastating event in a young person or as a result of trauma, and compensation has traditionally appeared rather poor. Actuarial figures are available for such losses, and one can now be confident that loss of the lower leg need not necessarily be too great a handicap. The most common reason for amputation is peripheral vascular disease in elderly people and in diabetics, but road traffic accidents still represent the most frequent cause in young people. A previously fit person under the age of 40 can anticipate walking without a limb, skiing, and performing many sporting activities, and would only be impaired by a 25 per cent increase in energy consumption on normal walking speed. This rises to 55 per cent when extended to above-knee amputations, but again for young relatively fit people, the impact on the quality of life is well understood in both rehabilitation and actuarial terms.
There is no doubt that the simple provision of a limb is not beneficial to every amputee. They have many needs, only one of which is a limb, and these need to be addressed via the rehabilitation process. McColl (1986) found in a review of the literature that there were many instances where a limb had been provided but was never used. It lay unused in the patient’s home, and the patient was far better adapted to life in a wheelchair. One of the real values in the rehabilitation process has been the accurate assessment of the needs of the individual and his or her carers, and the quality of life of such individuals has been greatly improved by the enhancement of the rehabilitation service. In addition, new technologies, in particular computer-aided design and manufacture, have allowed the development of intelligent knees and ankles and sprung feet to improve energy absorption and the consequent gait pattem (BSRM 1994).
Disability equipment and new technologies
Inappropriate and untimely prescription of disability equipment is the result of poor or inaccessible rehabilitation and very often this results in expensive wastage of resources. Assessment of the need for equipment can be made by effective communication between staff, the patient, and the family. Equipment is designed to reduce handicap and is not necessary if the individual has the ability to carry out the function it was designed for. Rehabilitation also allows the experience of staff to help in the choice and appropriateness of equipment, since there is often a confusing array of items, some of which do not actually carry out the job they purport to do. Follow-up in rehabilitation is important and one of the benefits is regular assessment of needs as new equipment becomes available.
Disabled people benefit from exposure to and experimentation with new technologies. While a medical rehabilitation service is not always necessary for disabled people and their families to learn about new technologies, it does allow the education process by which the disabled person will understand his or her condition and the interaction with equipment to reduce handicap. Specific medical technologies are being developed all the time and they can significantly alter the quality of life for the affected individuals (Rushton 1997). Included in these are neurological endoprostheses. These have a multiplicity of functions and include bladder stimulators, intrathecal baclofen pumps, and muscle stimulator implants. More information on these appears constantly and there has been an excellent recent review of the whole subject of neuroprostheses, modulators, and stimulators (Rushton 1997).
Accurate and up-to-date information is the key to empowerment for disabled people and their carers. The rehabilitation process allows contact with personnel and agencies who hold the key to the resource or to ways of accessing the necessary information process. Not only do professionals give advice, but they can also help disabled people and carers, making valued judgments about the quality of the advice and subsequent actions. Lack of contact with rehabilitation services means that disabled people have to find things out in an ad hoc rather than a structured manner, and much time and effort can be wasted.
Information should cover not only health matters, but benefits and allowances, community mobility, further education, training and employment, housing, leisure and recreation, and the formation of self-help groups, as well as a whole host of other activities which make up independent living. It is also important to have information about involving lawyers at an early stage of a potential claim for personal injury as they can become part of the rehabilitation team in these instances. However, information to disabled people and their carers must be coupled with practical advice in order to be really useful. A recent study of the activities of the North Staffordshire Rehabilitation Centre shows that the simple giving of information may increase the anxieties and stresses, as details of the potential difficulties in looking after a disabled person may overwhelm the family and carers unless practical solutions are given to methods of coping physically and emotionally with the needs of the disabled person (Ward and Wynn 1996).
The evidence to show that rehabilitation works in populations is different from that in many other areas of health care, as it is tailored to the individual’s needs and is not a standard item, like a drug. However, at a time when savings in health budgets have to be made, rehabilitation is an easy target. It has a low profile and little public appeal, as people are not seen to suffer directly through a lack of it. Rehabilitation services are thus currently under threat as hard evidence is required before they will be funded and there is a common belief that there is no good evidence to support rehabilitation. Obtaining research money is difficult both because of this low public appeal and because research in rehabilitation is thought to be difficult. As a result, finding a vehicle for publishing rehabilitation research can be difficult and publication tends to be in less widely read journals. This is not good for either rehabilitation or for patients. If rehabilitation is to develop, it is necessary to have a healthy research base to counteract these threats. Good, scientifically sound, and clinically convincing research should actually be no more difficult in rehabilitation than it is in other fields of health care. Furthermore, the confidence of the research world in rehabilitation should be boosted by the fact that many areas of medicine have less published evidence of their effectiveness than rehabilitation and examples include surgery, general medical care and many aspects of mental health.
Randomized and other controlled clinical trials give the best evidence (Sackett et al. 1991) and the Cochrane Collaboration has registered all randomized and controlled clinical trials relating to health care interventions, including rehabilitation. They have undertaken to identify and register all randomized clinical trials, as only a minority of all studies undertaken can be identified through searching Medline and other databases. This involves undertaking hand searches of journals to register all controlled trials on Medline. This has now been applied to articles published in Clinical Rehabilitation between 1987 and 1995 using the same criteria as those of the Cochrane Collaboration and by Medline for determining the nature of each study. A trial was considered to be a randomized controlled trial if the individuals (or other units such as limbs or treatment periods) were definitely or possibly assigned prospectively to one of two (or more) alternative forms of health care using random allocation, whereas a controlled clinical trial was classified if the same criteria apply but the allocation was more random (e.g. by date of birth, day of the week, etc.). Over the 9 years, 25 randomized controlled trials and 16 controlled clinical trials were published by all professions. This analysis shows that it is possible to judge good scientific research in rehabilitation (Wade 1995), but care should be taken that simple searching of Medline will give all the published data on a subject. Some studies by the very nature of the work and the samples available will be too small to give definitive answers and carrying out meta-analysis on studies in rehabilitation has led to some serious errors in conclusion (Anonymous 1992).
Randomized controlled trials have practical limitations in rehabilitation research (Andrews 1991), and trials examining packages of care are methodologically unsafe due to the heterogeneity of the needs of patients undergoing a rehabilitation programme (Tallis 1991). Thus single-case studies are helpful and allow for the examination of different aspects of rehabilitation intervention in smaller numbers of individual patients using baseline, treatment, and no-treatment phases over time (Ebrahim 1990). They should not be dismissed, but with the greater sophistication required and the need for rehabilitation to establish itself alongside the other main areas of health (and social) care, properly conducted controlled trials are required if rehabilitations are going to convince colleagues that theirs is a serious undertaking. Currently, careful evaluation of all studies is necessary in order to list the areas where controlled trials are most urgently required. This should span all areas of rehabilitation and involve all participating professionals, but should be carrried out where possible in a randomized controlled trials (Wade 1999b). The common weaknesses in design are listed in Box 4.
Box 4 Common weaknesses in the design of randomized controlled trials
Inadequate trial size
Lack (or poor choice) of controls
Lack of definition of therapy
Inappropriate outcome measurement
Lack of blinding
Lack of cost information
In describing in greater detail the difficulties and some of the possible solutions in the context of stroke rehabilitation, the pitfalls are highlighted, particularly in defining the therapy inputs (Pollock et al. 1993), for it is unclear from many studies of stroke units whether it is the medical or therapeutic interventions that have led to change.
Rehabilitation outcome measures
In any clinical setting, outcome measurement is an important activity. Since rehabilitationists work in an environment of distinction between pathology, impairments, activities, and participation, it is also convenient to decribe relevant outcome measures along these lines. For instance, if the aim of a rehabilitation episode is to allow a disabled person to climb the stairs to access the bathroom, one can approach this problem in a number of ways. One could aim to alter the underlying pathological condition, in which case measures of this would be appropriate (e.g. erythrocyte sedimentation rate in inflammatory joint disease). If the pathology could not be changed, then diminishing impairments by restoring muscular strength to the individual and disability by practising stair climbing and walking would allow a return of function. Alternatively, it may be assumed that the patient will not achieve the goal by himself and the provision of two wheelchairs and a stair-lift in addition to finding a means of transfers will achieve the objective, but in a completely different manner. All are valid rehabilitation activities, but the range of skills and required outcome measures are quite different. Therefore a measure has to be chosen that will reflect not only the goal, but also the process by which that goal can be achieved.
There are a number of misconceptions in research for better outcome measures. The greatest is perhaps that better measures will lead automatically to better information and that a more satisfactory solution will result. One problem is also that outcomes are misunderstood. Patients present for rehabilitation with problems and rehabilitation is a problem-solving exercise. Outcomes here refer to the change in status of the person in need of intervention and for this one has to identify what the process is trying to achieve. The measure chosen should cover the whole of the area of concern and, as far as possible, should not include extraneous areas. The choice of outcome measures in the context of quality control needs to be discussed among the stakeholders. Service commissioners may well have different goals for rehabilitation (and therefore outcomes) than providers, and therefore measures should be put in the context of what the service is trying to achieve in the market place. Figure 7 shows the structure, process, and outcomes from rehabilitation episodes (Wade 1999a).
Fig. 7 Rehabilitation structure, process, and outcome. (Source: Pollock et al. 1993)
There are a number of appropriate measures, and Measurement in Neurological Disability (Wade 1992) is a useful aide memoire. It is not appropriate to list individual measures in detail, but there are a number of publications which highlight them. Measurement is a key area for setting standards in rehabilitation. No matter what the setting—be it a specialized rehabilitation centre or a community rehabilitation team—it is possible to identify a standard in multiprofessional working by some of the following standards.
Each rehabilitation team should work within written criteria for seeing and treating patients.
Each rehabilitation team should utilize appropriate outcome measures and should document at least one of these at admission and discharge for each patient.
Clear written goals should be identified for the patient’s rehabilitation, which should actively involve the patient and family.
In conclusion, outcome measures are only tools and not solutions to better services and their value depends upon the validity of the process being examined. It is dangerous to draw conclusions from studies, be they research, audit, or daily clinical practice, until the context of the situation under examination is clear.
Rehabilitation has grown enormously over the last two decades, and is now becoming a part of the training of neurologists, rheumatologists, geriatricians, respiratory medicine physicians, and cardiologists. Formal training programmes are now established worldwide for specialists in physical and rehabilitation medicine and it now forms an important clinical and political activity in health care. However, where does it go from here? Not only does it have to embrace change, but there are also many challenges facing rehabilitation and physical disability four of which are highlighted here for their relevance to the field of public health.
New technologies have changed the lives of disabled people, and Rehabilitation Medicine and the British Society of Rehabilitation Medicine has published several excellent reports on environmental controls, wheelchair equipment, neuroprostheses, and neuromodulators (Rushton 1997). The use of computers in rehabilitation will assume even greater importance in allowing patients to benefit from programmes to assist their own rehabilitation (Clegg and Turner-Stokes 1998). The use of the internet for shopping, banking, etc. will mean that disabled people will be able to manage many aspects of their lives from their sitting room; however, with this comes the spectre that many will not have to go outside at all which will have its own impacts.
Rehabilitation is all about opportunities for people within the context of their abilities and wishes. The squeeze on finances in health care will undoubtedly affect rehabilitation services to a greater extent than the more ‘sexy’ ones, as the cost of not providing them will be politically less damaging. Better organization of health and social care is necessary and it is hoped that joint commissioning of services will reduce some of the unnecessary costs. Achieving the right balance between reducing impairments, disabilities, and handicaps and promoting abilities and participation are important goals for service planners. While it is vital that people are encouraged to attain optimal physical functioning, there is a need to ensure that this is cost-effective. While it is obviously desirable for people to be given every opportunity for return of physical functioning, the selection of suitable candidates for rehabilitation will also be important. Not everyone will be able to or want to walk again after a stroke or an amputation; therefore investment in this activity may not be wise, especially if it is at the expense of providing disability equipment or home adaptations.
Vocational rehabilitation has virtually ceased in the British health care system and there is little awareness of what is required, let alone how to ensure that people coming out of rehabilitation programmes have the opportunity to return to or take up employment. This has changed over the last 20 years and has resulted in the United Kingdom falling behind many countries in Europe, the United States, and Australia. Claims of about twice the rate of return to work after head injury are noted by the establishment of cognitive retraining and physical rehabilitation programmes in the United States, Germany, Switzerland, and Sweden, but there are differences in severity, social security benefits, etc. that make direct comparison difficult. The experience of Australia and the United States in dealing with the repetitive strain injury/disorder explosion of the 1970s and 1980s has meant that their guiding principles have moved away from a compensation culture to one of promoting rehabilitation to return people back to work. A comparative scale is required for success in disabled people returning to work after injury/illness and then staying in work. In order to achieve this, specialized centres of research and demonstration are required to look into the factors in bridging the gap between health, social, and employment rehabilitation. Government backing of such a project is required and discussions at departmental level are needed to work out a strategy for changing the face of rehabilitation in this area. The challenge is not only valuable, but is urgent and there are clear advantages to disabled people, rehabilitation professionals, and government itself in attempting to reduce expenditure on incapacity to work benefits.
As rehabilitation of elderly people becomes a greater priority, greater awareness is necessary of the different approaches required for general and specialized rehabilitation. Rehabilitation depends on clear therapeutic aims which are fundamental to health care responsibility. This applies equally to maintenance rehabilitation and to acute rehabilitation. Conversely, care is the means of maintaining safety and comfort. Rehabilitation professionals may be involved in periodic assessments of abilities and health status and an episode of rehabilitation may be triggered by the need to reverse functional deterioration of capitalize on any improvements. Clear outcomes must be identified in terms of therapeutic changes and shared between the participating health and social services professionals, the disabled person, and the family.
Rehabilitation research is growing in activity and sophistication, but suffers from a lack of credibility in some circles because randomized controlled trials are difficult to perform in this field. Other methodologies may not provide as conclusive results, but are nonetheless of value and require support. While the effectiveness of treatments in many fields of medicine is not proved, much data about the effectiveness of rehabilitation is currently available. Data are now required on the value of rehabilitation through cost-effectiveness studies, some of which are underway (Turner-Stokes et al. 1999; P. Harding et al., personal communication).
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