Select Committee on Health Appendices to the Minutes of Evidence


Memorandum by UKABIF (H 51)


  1.  This evidence examines the needs of people with severe forms of acquired brain injury who have complex disabilities. They are an important group because they will not spontaneously improve and their long-term costs to the country are large because of the high level of continuing professional support they require.

  2.  Chronic and complex acquired brain injury in young adults has a major impact on the individual, their families and society yet they attract little attention in the provision of services.

  3.  Whilst this young disabled group does not fall into the stated top priority for NHS provision, there is a considerable recognition from the Government on providing high levels of care for people with complex and chronic disabilities.

  4.  Modernising Health and Social Services: National Priorities Guidance 1999/00-2000/01 states: "Two key objectives are to: treat people with illness, disease or injury quickly, effectively and on the basis of need alone; and to enable people who are unable to perform essential activities of daily living, including those with chronic illness, disability or terminal illness, to live as full and normal lives as possible."

  5.  There is considerable emphasis on partnership between the Health and Social Service Departments as seen in The New NHS: Modern and Dependable, Modernising Social Services and the setting up of Joint Investment Plans. However, lack of communication and collaboration between the health, social, housing, educational and vocational services is a common complaint of patients, families and disability support groups.

  6.  Considerable emphasis is placed on quality and evidence based practice as seen in A First Class Service and the setting up of the National Institute for Clinical Excellence (NICE), Health Improvement Programmes (HimPs) and the development of National Service Frameworks (NSFs). However, there is little, if any, consideration given in planning for people with chronic and complex disabilities.

  7.  Whilst chronic and complex disabilities do not involve a very large number of people, they meet the criteria for setting up a NSF having a very significant effect on morbidity, disability and resource use. There is considerable concern that the services are not being provided and the care pathways are complex (involving health, social services, education, employment and housing).


  8.  The term "complex" covers the combination of a number of clinical features (such as medical, physical, cognitive, psychological, behavioural, social and effects on family, education and vocation), each of which require specialist knowledge yet require effective inter-disciplinary team work.

  9.  Complex disabilities due to acquired brain damage involve a combination of impairment, disability and handicap.

  10.  The complexities of these disorders require a wide range of professionals in the multidisciplinary team and skill in setting priorities of care.

  11.  The more complex the disorder the more likely it is that long-term residential care will be required or considerable resources invested in home care.


  12.  The annual incidence of severe brain injury is about 8/100,000 population.

  13.  The prevalence of severe brain injury is about 100-150/100,000 population.

  14.  General Practitioners will rarely see a patient with severe disability due to acquired brain injury—an average General Practitioner will see one severely disabled person with head injury every ten years—and possibly never see a patient with the Vegetative State or behavioural problems. Therefore, the ability to develop expertise in the commissioning of services for this group is extremely limited.

  15.  20-25 per cent of those 16-45 years of age with brain damage remained severely or profoundly disabled six months following their injury.

  16.  The hospital care of severely disabled brain injured people is frequently carried out in the independent (private and voluntary) sector.

  17.  Health Authorities rarely have figures about the number of people with severe acquired brain damage and often underestimate the size of the problem.

  18.  A large proportion of patients with severe brain damage are managed at home even though the complexity of the conditions was often difficult to manage, even in hospitals.

  19.  Considerable difficulties occur in placing people with severe and complicated brain damage. As many as 70 per cent of those patients in the vegetative state and about 20 per cent of those in the other groups of severely brain damaged were still in hospital 18 months after the onset of the brain damage—and over 59 per cent of all groups were still in hospital at eight months following the brain damage.


  20.  There are several basic patterns of disability including recovery, partial recovery, static and deterioration. Each pattern requires a different approach to management with goal setting and measurement of outcome being different for each pattern.

  21.  In the acute and "medical" phase "disease" (the pathological process) and "impairment" (clinical features of damage to an organ or part of the body) take a predominant role; in the rehabilitation phase "disability/activity" (the restriction or limitation of function) is more important; whereas in the chronic and community phases "handicap/participation" have greater emphasis. These are, however, interlinked and overlapping concepts, which are important for management at all stages of the process.


  22.  The rarity of many complex disabling disorders prevents local units developing the necessary experience and skills to provide optimal management of these patients. Not all rehabilitation units have access to the full range of professionals. It would not be economic to develop all skills and services in each district for such a small group of patients.

  23.  The organisation of services for people with disabilities fall into several categories including the acute phase emphasising on medical and surgical input, the stage for those making significant "recovery" but still having some problems; those remaining "moderately" disabled, and those with chronic, complex and severe disability.

  24.  There are difficulties in providing an integrated (seamless) service. The difficulties of this have been emphasised in the Report by the Royal College of Surgeons on the Management of Patients with Head Injuries. They recommended that head injured patients should be managed by a neuroscience unit and that each neuroscience unit, together with the host trust and purchasers, should ensure that: there were adequate referral systems in place; local A&E departments should work with agreed protocols on initial assessment; and that there should be appropriate protocols available for transfers.

  25.  The Royal College of Surgeons Report's recommendations, which have particular reference to those severely head-injured patients were that:

    (a)  Those with severe head injury of focal signs should be transferred to a neuroscience unit irrespective of whether they need surgical intervention.

    (b)  Those needing ventilation and/or intra-cranial pressure monitoring should be admitted to an ICU with on-site neurosurgeons and neuroanaesthetists.

    (c)  Neurosurgeons should be contactable at all times.

    (d)  Neuroscience units should not be located on isolated sites.

    (e)  Neurosurgeons should work within a multi-disciplinary neuroscience unit that has an ICU with trauma beds and neuroanaesthetists.

    (f)  These units should be based on major acute sites and should have input from neurosurgeons, neurologists, neuroanaesthetists, neuroradiologists and specialists in rehabilitation medicine.

  26.  The Royal College of Surgeons Report states "Patients with intermediate and severe head injuries wait in acute hospital beds which delays their treatment, makes subsequent treatment more difficult and protracted, and probably adversely affects the outcome." The Report goes on to say "Patients needing neurorehabilitation require the expertise of trained rehabilitationists working in an adequately resourced multidisciplinary rehabilitation unit. All rehabilitationists who are involved in the management of head injuries should be adequately trained in head injury rehabilitation as part of their training programme."


  27.  Wade has pointed out that "rehabilitation is not synonymous with therapy or treatment. Instead it is an approach to problems, a process which happens to include "therapy" but also includes prescription of drugs, provision of aids and equipment and counselling among other interventions".

  28.  "Rehabilitation" is a complex process involving a broad range of concepts. It does not fit comfortably into a purely clinical discipline, involving, as it does, a broad range of clinical, social, vocational, educational and philosophical concepts. Bringing these together into an integrated service is a challenge for communication between health, social services, education, employment service providers and the voluntary sector. It is a common complaint of patients, families and their representative organisations that there is a lack of leadership and acceptance of responsibility for bringing these services together.

  29.  The term "disability management" has been used to cover the process of preventing deterioration, managing complex long-term disabilities and rehabilitation of patients with conditions which are slow to recover.

  30.  The nature of rehabilitation requires the organisation of multi-disciplinary teams that work with disabled people and their families. In addition, the co-ordination of hospital rehabilitation and community services involves a range of social services, housing departments, employment agencies and voluntary organisations.

  31.  There is a need to develop a system that enables this collaboration to be made in an efficient, cost-effective way. Case Management or Co-ordination of services needs further development. The concept of case managers with experience of the needs of people with complex disabilities and the services available throughout the health, social and voluntary services has had an important impact in ensuring disabled people are able to find a way through the complex network of services.


  32.  Evidence based practice is a fundamental part of clinical management with commissioning of services being largely dependent on the evidence that a particular form of treatment is effective.

  33.  The complexity of disabilities due to acquired brain injury; the multidisciplinary interventions and the educational model of rehabilitation make rehabilitation research particularly difficult.

  34.  Fleminger in a systematic review of rehabilitation for head injury found that "there was an almost complete absence of randomised controlled trials." He concluded that "the evidence base on which to determine practice guidelines for rehabilitation following brain injury is very limited. This partly reflects the difficulty in setting up studies in this field, but perhaps also reflects the general lack of investment in rehabilitation. There is evidence that rehabilitation works, but the quality of that evidence is poor."

  35.  Wade also reviewed the literature and concluded "The evidence that rehabilitation works is strongest at the two ends of the spectrum: for individual patients and for large heterogeneous groups of patients. It is weakest when focussing on specific components of the process. Most studies have taken reduction in dependence to be the measure of success and none have investigated the effect upon handicap or distress."

  36.  There has been almost no research into the problems of those with more chronic disorders. It is therefore difficult to provide the evidence based practice required by modern health planning. There needs to be a regional centre to develop and coordinate multi centre research in this field.


  37.  Complex disabilities cannot be seen purely in terms of health care since the long term needs require a combination of health, social services and housing requirements—and for those with good cognitive function, the inclusion of vocational and educational training.

  38.  Chronic complex disabilities often result in a dispute between the health and social services departments as to who should (and usually who should not) accept responsibility for funding services for chronically disabled people. The level of communication between the groups varies widely between different authorities and therefore the level of care differs depending on postcode.

  39.  There are no Joint Investment Plans (except for return to work) planned for the management of people with complex disabilities, and therefore there is a great risk of this group falling through the net of joint planning between health and social services.

  40.  People under 65 years of age with physical or sensory disabilities requiring residential care were 3.5 per cent of the total number of people supported by local authorities in care in 1998.

  41.  Whilst there has been a dramatic increase in the total number (ie all age groups) of people in care, there has been little change in the number of young people with physical or sensory disabilities.

  42.  The independent (private and voluntary) sector now accounts for 87 per cent of the care of people with physical or sensory disabilities.

  43.  The control of standards are not only a matter for the statutory services but there needs to be clear standards, associated with training and support for the private and voluntary services providing care for such vulnerable people with complex disabilities.


  1.  The effects of severe acquired brain injury are usually complex and often chronic.

  2.  The variety and rarity of the presentations of acquired brain injury create additional problems in assessment and providing the availability of skills.

  3.  Many Health Authorities do not have figures about the number of people who have acquired brain injury and are unable to identify where patients with various special needs are treated or cared for in the long term.

  4.  This group are not included in any of the priorities for health service commissioning and joint investment plans.

  5.  The complex forms of disability are relatively uncommon which has significant implications for the commissioning and provision of services. This is seen particularly in terms of primary care group/trust commissioning.

  6.  The needs of this group fall across health, social services, housing and the voluntary service boundaries.

  7.  There are difficulties in co-ordinating the services for people with complex disabilities because of the rarities of the conditions and the multi-agency care needs.

  8.  The rarity of the conditions makes it difficult to develop experience and expertise at a local level.

  9.  The long-term needs of people with complex disabilities are often seen in social terms although there is an ongoing clinical need for many in this group.

  10.  There is a lack of specialist centres for the management and planning of services for people with complex disabilities.


  1.  Regional health authorities should have a register of people with acquired brain injury and have data on the care pathway to ensure that none slip through the complex net of health, social services, and vocational and educational needs.

  2.  In view of the rarity and specialist nature of complex disability, the commissioning of services should be the responsibility of a regional or sub-regional authority.

  3.  There should be a formal regional policy on the role and functions of each of these levels of services and care pathways should be clearly defined.

  4.  There should be an integrated approach to rehabilitation and disability management services in the region to avoid unnecessary duplication of scarce resources and skills, to encourage the development of special centres to manage specific unmet needs and to decrease the tendency to postcode provision of services.

  5.  There should be a regionally based policy on research and development into complex disabilities with specific areas identified and multi-centre research set up.

  6.  A mechanism should be set in place for the training, advice and support of staff caring for people with complex disabilities in their local communities.

  7.  There should be a formal regional policy between health and social services on funding responsibility and co-ordination of services for people with complex disabilities. A joint investment plan for complex disabilities is a suggested mechanism for this.

  8.  It is recommended that a number of co-ordinators be appointed to work across health and social services to help plan and co-ordinate the services for people with complex disabilities.

February 2001

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