Select Committee on Health Appendices to the Minutes of Evidence


Memorandum by Mr Norman Keen (H18)


  A very significant number of people who have survived a moderate-to-severe brain injury have no major physical disability. They, however, have complex cognitive, behavioural and emotional difficulties, and often little awareness or insight into their situation. They largely go unrecognised by professionals and the public at large. A majority are young men, with normal life expectancy. They tend to drift aimlessly through life. They remain on benefits and often get into trouble with the law. They are very much at risk. The quality of their life is very low. The burden on their families is immense. They represent a significant cost to society. Much of this could be avoided with appropriate interventions at the right time.

  The specialist rehabilitation and knowledgeable follow-up in the community, needed to help such people lead meaningful lives, are generally not available. Headway groups and branches are often left to try to fill this gap. Attention was drawn to this state of affairs by the Social Services Inspectorate in 1996, but very little seems to have changed. Their report should be re-visited.

  A number of measures need to be put in place as part of an integrated programme to ensure that people who have survived a brain injury, and their relatives and carers, receive services appropriate to their needs:

    —  Training and education of healthcare and social service professionals regarding the needs of people after an acquired brain injury must be a high priority.

    —  An overall care plan—including rehabilitation on an ongoing basis—should be formulated for each brain injured person before discharge from the acute hosptial.

    —  Further inpatient brain injury rehabilitation units should be established across the country to provide immediate post-acute rehabilitation.

    —  More units providing later-stage rehabilitation—on a day basis—should be set up, including centres providing holistic, intensive neuropsychological rehabilitation.

    —  Knowledeable follow-up services in the community are essential if rehabilitative gains are to be sustained. A "critical mass" of such people needs to be established as soon as possible.

    —  As an interim measure, consideration should be given to encouraging trained professionals from abroad to work in this country.

    —  Help and training should be given to brain-injured people to undertake work or other productive activity, and to live as independently as possible.

    —  Recognition and the necessary support, including respite, should be given to their relatives and carers.

    —  Each brain injured person living in the community should have support from a knowledgeable case manager. This is a specialism which needs to be developed within Local Authority social services.

    —  Consideration should also be given to part-funding of the rehabilitation needed through a no-fault compensation scheme operated in conjunction with the motor insurance industry.

    —  We are a very long way from a "seamless service" at present. There should be inter-agency collaboration, including the voluntary sector, covering health, social services, social security, employment, education and housing. Consideration should be given to a task force, in each area, to co-ordinate matters.


  I am a carer, together with my wife (Lilian), of our son David, now 34—who was knocked down as a pedestrian eight years ago and suffered a severe head injury. He is generally physically able, but has been left with higher-level cognitive, emotional and behavioural problems, and has not worked for any sustained period since then. I took early retirement in 1993, six months after my son's accident. My wife and I have been effectively David's case managers since then, and have sought to find the most appropriate help for him. This continues to this day.

  This has led to a particular interest in the efficacy of holistic neuropsychological rehabilitation, in particular where there is limited "insight" or awareness of their problems on the part of the brain-injured person.

  I am actively involved in a range of Headway matters: a founder member of East London Headway, which has established the first Headway House day centre in inner London; member of the recently formed London Region Committee of Headway, which is working with Headway central office to strengthen and expand Headway services in the capital; and member of Headway Groups and Membership Committee. Member of the United Kingdom Acquired Brain Injury Forum (UKABIF), the Society for Cognitive Rehabilitation and the European Brain Injury Society (EBIS).


  2.1  My comments relate to people who have had a moderate-to-severe (and in some cases, a so-called "mild") brain injury. I comment particularly on the situation in London.

  2.2  Such an injury can happen to anyone at any time. Such people typically have complex cognitive, behavioural and emotional difficulties which remain even two years after the injury and in many cases for the rest of their lives. They will also, in many cases, have little awareness or insight into the nature of these difficulties, and how it is affecting their daily lives. They often have no major physical disabilities. Each case will be different; no two brain injuries will be the same and each survivor was a unique person before their injury.

  2.3  There is a relatively high proportion of such people in the brain-injured community, who generally go unrecognised—both by professionals, who are there to help them, and by the general public—since they "present" well. They only generally get attention when it becomes apparent that they are a danger to themselves and to others. They are what we refer to as the "walking wounded". There is a high proportion of young people in their 20s/30s (mainly young men) with normal life expectancy.

  2.4  There is generally no separate category in Community Care Plans/Health Improvement Programmes (HIMPs), and they are usually included, if at all, under Physical or Sensory Disabilities. Sometimes they are treated as if they had mental-health problems or learning difficulties. Their actual needs tend to get overlooked or ignored. The situation regarding HIMPs—and reference to acquired brain injury—is particularly bad in London.

  2.5  A Social Services Inspectorate appraisal published in 1996 very well describes the plight of brain injured people and their families. A very useful summary document—which highlights many of the main issues involved—accompanied the report, and is enclosed as Appendix A.[1] Very little of real significance seems to have changed since 1996. The SSI report should be re-visited.

  2.6  Such people tend to drift aimlessly through life, without any real direction or purpose. They remain on some sort of benefits and often get into trouble with the law. In London, many are single and live alone. They are very much at physical and emotional risk. The quality of their life is very low. They are a significant (and, will in time become a greater) cost to society. Much of this could be avoided with appropriate interventions at the right time.

  2.7  Such interventions would improve their lives immeasurably, the cost of which would be justified by their increased quality of life and that of their family and the social costs saved. They need help from professionals who have knowledge and experience of working with people with such difficulties. Such help takes the form of care, advice and advocacy, rehabilitation of a formal and community-based kind, and overall case management.

  2.8  It has to be recognised that, although the most obvious and rapid improvements take place in about the first two years, significant improvement can occur over many years. However, there will generally be residual deficits which will remain with the person for the rest of their life and with which they will need ongoing help.

  2.9  Having a person with a head injury in the family places a great burden and stress on the close family members, whose lives are changed for ever. They—suddenly—have a different person in their midst, who looks the same, but behaves quite differently and is unaware of what has happened to them. It is in some respects like having lost an adult son or daughter, or a partner, and gained an argumentative child in the family. But they are not a child. The family will need support, and education on how the head injury has affected their relative, and how best to cope with the situation. They will need guidance on sources of informed help and advice. They may also need counselling and respite services. Their stress levels will tend to increase with time.

  2.10  Many carers are middle-aged parents of young men—and often also act as their case managers. They cope in this way often with very little recognition, or assistance, from social services. They will only be able to do so for a limited number of years into the future, and need help to put an alternative, and effective, support system in place while they are still young and fit enough to guide the process.

  2.11  Relatives—partners, parents, siblings—should be encouraged to be involved in rehabilitation activities, since they are an "expert" on their brain-injured relative.


  3.1  There is, unfortunately, a widespread lack of understanding among the general medical community (including GPs) and other professionals (community therapists and social workers) on the relatively subtle and complex, but profound, effects of (even a mild) brain injury on the person concerned and their family and carers. This is to some extent understandable, but what has been particularly regrettable has been the refusal on the part of such professionals—with, as always, notable exceptions—to admit that they don't have the required knowledge and be willing to find out from those who do. Where services are provided, they are often inappropriate. A recent publication describes the situation very well, and explores reasons why people tend to hold particular beliefs in respect of brain injury.

  Thankfully, this state-of-affairs is now—albeit slowly—changing for the better. But that still means that currently, after a brain injury, most people and their families are left very much to their own devices as far as getting the right sort of help is concerned. This is a gap which Headway is increasingly trying to plug.

  3.2  The same lack of understanding exists to an even greater extent in the benefits system. Those responsible for legislation and guidelines regarding disability benefits—and their medical advisers—often seem unaware of the effects of an acquired brain injury on the person and the family. The same applies generally also to disability advice services. The eligibility criteria for Disability Living Allowance and Incapacity Benefit/Severe Disablement Allowance take insufficient account of the complex cognitive and other difficulties which affect the person's capacity to function without help.

  These benefits are often only agreed at the appropriate level where there is a knowledgeable advocate who can interpret and explain the situation to the adjudication staff who decide such matters. Brain injured people have often been subjected—inappropriately—to the All work Test which, perversely, is designed to measure what they are generally capable of, but expressly ignores the sorts of things they are incapable of. They are then deemed to be "capable of work". This all puts an added strain on the person and their family, when they are trying to cope with their changed circumstances. The operation of the benefits system in respect of brain injured people needs to be thoroughly reviewed.

  3.3  Specialist facilities and expertise for people who have survived a brain injury are very thin on the ground.

  3.4  An overall care plan should be formulated before discharge from hospital—to include rehabilitation on an ongoing basis, from inpatient through to community rehabilitation. Sadly, this is very much the exception.

  3.5  At the early stage (up to about the first 12 months) residential rehabilitation is usually most appropriate. In the London area, there are a small number of excellent inpatient rehabilitation centres organised on a regional basis, which, because of their paucity, are often located some considerable distance from where the patients and their families live. All have waiting lists and are necessarily resource—and time-limited. Some may be able to provide a limited amount of outreach support.

  Immediately following such rehabilitation—if available—there is usually no specialist follow-up in the statutory sector—unless the person is referred to a Headway House day centre. Very often the person and their family get the impression that everything will now be alright. Sometimes the person returns, or tries to return, to their old job, often with disastrous results.

  3.6  Some time later, there will be an emerging realisation—at least on the part of the relatives—that some aspects of the person's life may have changed for good. What is then needed is broadly based rehabilitation of a more-holistic kind, carried out over an extended period on a day-client basis. This would be based on a social/educational model and would include a strong vocational element (see section 5 for a fuller description of this approach).

  There is no centre in the London area which can provide a full service of this kind, although there are units which address some of these aspects very well. These include the Brain Injury Rehabilitation Unit (BIRU) at Edgware Community Hospital and the Wolfson Neuro-Rehabilitation Centre in Wimbledon—which both operate on initial inpatient basis—and the Rehab UK Brain Injury Vocational Centre in south-east London which takes clients on a day basis. Otherwise, there are a number of well-regarded units outside London—for example, the Oliver Zangwill Centre in Ely and Bedgrove Community Head Injury Service in Aylesbury—to which people from the London area have been referred as day clients (they, in most cases, have to find accommodation in the area). Rehabilitation units of these kinds are needed in the London area.

  3.7  An important issue of the journal Neuropsychological Rehabilitation in 1999 (relating to outcome measures in brain injury rehabilitation) included contributions from some of the most active rehabilitation centres in the United Kingdom3.

  3.8  There may also need to be help with (semi-)independent living through: training in a transitional living unit; and/or help in their own homes from a specialist outreach team (either associated with a rehabilitation unit or involving trained therapists/social workers in the community).

  3.9  It must be stressed that the majority of people who survive a brain injury, and their families, get no or very little specialist help or support at the present time. And even those that do, tend not to get the essential, ongoing community-based help that they need to lead meaningful lives (see 6).


  4.1  There is, undeniably, a resource problem—too few specialist units, and nothing like enough staff trained to work with brain-injured people—neuro-psychologists and -psychiatrists, occupational therapists, speech and language therapists, and physiotherapists.

  4.2  It is imperative that steps are taken over time, to remedy this resource problem, and this can only be done by using the existing centres of expertise to "grow" new rehabilitation units (through training, secondments, etc)—closer to where people live—and to train community therapists and social workers, so that follow-up support can be provided in the community. We need to reach the stage where a "critical mass" of resources and expertise is built up in each area, so that the support systems needed by brain-injured people and their relatives and carers are self-sustaining. Without that, any initial flurry of activity is unlikely to have a lasting effect.

  4.3  It is suggested that—as a short term measure—consideration might be given to encouraging trained professionals, with experience of brain injury rehabilitation, from abroad, for example, Australia, to work in rehabilitation units and in the community in England.

  4.4  It must be recognised that working with people who have had a brain injury can be very demanding and emotionally draining of staff. Thus they have to be well supported within their units, if they are not to "burn out" and leave for less-stressful working environments.

  4.5  There is also a need to develop our rehabilitation programmes further, learning in particular from best practice in the USA and Australia and in other European countries (for example Denmark and Italy). These countries are ahead of England (and the rest of the United Kingdom) both in terms of certain rehabilitation strategies (eg, use of psychotherapy to treat depression and loss of self-esteem) and of the emphasis given by national or state governments to brain-injury rehabilitation.

  4.6  The US National Institutes of Health held a Consensus Development Conference in 1998 on "Rehabilitation of Persons with Traumatic Brain Injury". The press-release is given as Appendix B.[2] This kind of approach could be useful in the follow-up to the Health Committee's initial findings.

  4.7  As with any new client group, resources are a prime concern. It is suggested that consideration be given to whether, in addition to statutory funding, additional monies could be gathered and earmarked for rehabilitation purpose through a no-fault compensation scheme operated in conjunction with the motor insurance industry, as is done in certain parts of Australia and Canada.


  5.1  At the later, post-acute stage—probably after at least one to two years—when it becomes apparent that, without the right sort of help and support, the person is unlikely to be able to return to any sort of employment or productive activity, or to live at least semi-independently in the community—specialist rehabilitation is needed.

  5.2  The overall aim of the rehabilitation should be to help the person to adapt and come to terms with their new self, and through realistic goals and aspirations to achieve peace of mind in their new life situation. They should be helped to operate in the real world at the maximum level of which they are capable. And be provided with whatever ongoing support (in the community) is necessary to maintain that level of operation.

  5.3  This sort of rehabilitation needs to be carried out on an individualised and holistic basis—taking into account all aspects of the person's life.

  5.4  A particular aim should be to help the person gain some insight or awareness into the person they are now—including their strengths and weaknesses—and to provide help and encouragement with using their intact skills to develop (and "overlearn") compensatory strategies for things they now find difficult, eg, planning and organisation, problem solving, interpersonal relationships, etc. This should stand them in good stead when operating in the real world (but will need "refreshing" from time to time).

  5.5  As most of the people concerned will be in their 20s or early 30s, with a normal life expectancy, it is important that they get help to return to some sort of realistic, productive activity—which they find satisfying. This means, among other things, informing and educating employment service staff and employers about the nature of brain injury and its effects so that, with the right kind of help and support, many more brain-injured people can become valued participants in the workplace. It is their right under the Disability Discrimination Act, but at the present time very difficult to achieve.

  5.6  There is now a considerable body of (mainly) empirical evidence across the world that holistic neuropsychological rehabilitation, carried out on an intensive basis, can be effective in helping many people return to a meaningful life after a serious brain injury. For such people, this may be the only way they can be helped to obtain any real meaning in their lives.

  5.7  Such rehabilitation is carried out in a specialist centre, involving an interdisciplinary team of neuropsychologists, speech and occupational therapists, etc, within a "therapeutic community". The brain-injured person attends, say, four days a week as a day patient. Involvement of a close relative or "significant other" is an important part of the process. Programmes typically last from four to six months, but some people will need longer. Such centres will employ a variety of strategies to improve motivation, self-awareness, and cognitive competence, for example, extensive use of video techniques in a group setting; 1:1 counselling, including psychotherapy; practising new strategies for problem-solving, effective oral communication, and control of disinhibition and impulsiveness; and demonstrating the need to accept "coaching" and guidance from others when learning new skills.

  5.8  It is felt that to achieve the attainment of an optimal rehabilitation of the brain injured person, it is essential to co-ordinate and integrate the cognitive remedial training—ie, all those interventions that are aimed at making it possible for the person to compensate for specific intellectual and behavioural impairments due to the brain injury—with the other clinical interventions, eg, helping the person accept his/her predicament; restoring a sense of hope; motivating and improving morale; teaching the person ways of adjusting to his/her misfortune and to exercise appropriate social judgement, etc.

  It is recognised by all the major proponents of this approach that, following completion of such a programme, there should be continuity in follow-up in the community.

  Appendix 3 gives an overview of the general characteristics of such types of programme.

  5.9  Specialist rehabilitation centres, which work in this inclusive and intensive way, are rare and more are needed across the country.

  It is suggested that steps be taken to establish further centres, making use of expertise in existing centres in this country and abroad for purposes of training and exchange of experience and personnel, and that there is participation in any international multi-centre research projects to further establish the efficacy of this approach.

  5.10  Critics of this proposal will point to the high cost of such rehabilitation programmes per person, and that less-intensive programmes would help more people for the same cost. For many people, however, this may be the only way of helping them re-integrate optimally into society, including returning to some sort of competitive work on a sustained basis. With normal life expectancy for such people, the cumulative savings from this alone would be very significant.

  5.11  It should also be investigated whether some of the principles of this approach could be applicable to a greater extent in a community-based setting.


  6.1  Following formal rehabilitation, there should be integrated follow-up within the community—by social workers and others trained at a specialist "neurological" unit in the area. Each brain injured person living in the community should have help from a knowledgeable case manager—who can relate well to the person (and their family) and who can locate the most appropriate provision and services for their client. This is a specialism which needs to be developed with in Local Authority social services.

  6.2  Although there are some excellent community brain injury units across the country, they are few and far between and are mostly under-resourced. The more likely scenario in many parts of the country is that the main source of knowledgeable and specialist help will be that available from the larger Headway groups, who usually also have Headway House day centres. (Brain injured people in London are currently particularly badly served by the statutory sector and there are only two Headway Houses in the whole of the capital, although Headway is starting to take steps to try to improve the situation.)

  In such cases, the local Headway group is regarded by the Local Authority Social Services department as the primary source of community brain injury support in their area. They thus refer their clients to the local Headway House, where they attend for one or two days each week, but apart from that, there is generally no appropriate support for the person in the community.


  7.1  We are a very long way from a "seamless service" in my experience. The statutory sector generally remains fragmented and does not have the necessary knowledge and expertise, and is so hard pressed in other areas, that it needs to be positively encouraged to develop it.

  7.2  There should be inter-agency collaboration, including the voluntary sector, covering health, social services, social security, employment, education, and housing.

  7.3  Consideration should be given to an inter-agency task force, in each area, charged with developing the necessary expertise and building teams who could provide appropriate services to brain injured people and their families and carers.

  7.4  Discussions relating to Joint Investment Planning should lead to closer working between some agencies in the statutory sector and voluntary organisations, but the current emphasis on Welfare to Work issues, while undeniably important, is too narrow, particularly in the brain injury context.


  1  "A HIDDEN DISABILITY". Report of the SSI Traumatic Brain Injury Rehabilitation Project. July 1996 (reprinted April 1997). (Department of Health) [The accompanying summary document is enclosed as Appendix 1].

  2  Swift, T L and Wilson, S L (2001), Misconceptions about brain injury among the general public and non-expert health professionals: an exploratory study, Brain Injury, 15(2), 149-165.

  3  Evaluation of Outcomes in Brain Injury Rehabilitation, Ed Fleminger, S and Powell, J, Neuropsychological Rehabilitation, 1999, 9(3-4),225-554.

  4  US National Institutes of Health—Consensus Development Conference on Rehabilitation of Persons with Traumatic Brain Injury. 1998 (Available on intro.htm) [Press-release is enclosed as Appendix 2].

  5  Ben Yishay, Y, and Daniels-Zide, E. (2000), Examined Lives: Outcomes after Holistic Rehabilitation (Diller Lecture), Rehabilitatin Psychology, 45(2), 112-129.

  6  Chapters written by many of the leading practitioners of holistic neuropsychological rehabilitation around the world appeared in Interantional Handbook of Neuropsychological Rehabilitation, ed Christensen and Uzzell. 2000, Kluwer Academic/Plenum Publishers, New York. It included the following:

  Prigatano, G P, A Brief Overview of Four Principles of Neuropsychologic Rehabilitation, Chapter 7 (pp115-125). [Phoenix, Arizona, USA].

  Ben-Yishay, Y, Postacute Neuropsychological Rehabilitation, A Holistic Perspective. Chapter 8 (pp127-135), [New York, USA].

  Trexler, L E, Empirical Support for Neuropsychological Rehabilitation, Chapter 9 (pp137-150) {Indianapolis, USA].

  Christensen, A L, Neuropsychological Post Acute Rehabilitation, Chapter 10 (pp 151-163) [Copenhagen, Denmark].

  Daniels-Zide, E and Ben-Yishay, Y, Therapeutic Milieu Day Program, Chapter 12 (pp 183-193) [New York, USA].

  Klonoff, P S, Lamb, D G, Henderson, S W, Reichert, M V, and Tully S L, Milieu-based Neurorehabilitation at the Adult Day Hospital for Neurological Rehabilitation, Chapter 13 (pp 195-213) [Phoenix, Arizona, USA].

  Trexler, L E, Eberle, R and Zappala, G, Models and Programs of the Center for Neuropsychological Rehabilitation, Chapter 14 (pp 215-220 [Indianapolis, USA an Catania, Italy].

  Wilson, B A, Evans, J, Brentnall, S, Bremner, S Keohane, C and Williams, H, The Oliver Rehabilitation Zangwill Centre for Neurophychological Rebahilitation-A Partnership between Health Care and Rehabilitation Research, Chapter 15 (pp 231-2460) [Ely, United Kingdom].

  Caetano, C and Christensen, A L, The CRBI [Center for Rehabilitation of Brain Injury] at the University of Copenhagen. A participant—Therapist Perspective, Chapter 17 (pp 259-271).


  APPENDIX 1. A HIDDEN DISABILITY. Report of the SSI Traumatic Brain Injury Rehabilitation Project. July 1996. (Department of Health) Summary Document.

  APPENDIX 2. US National Institutes of Health—Consensus Development Conference on Rehabilitation of Persons with Traumatic Brain Injury. 1998. Press-release.

  APPENDIX 3 Characteristics of Holistic Neuropsychological Rehabilitation Programs.

  (From Trexler, L E. (2000). Empirical Support for Neuropsychological Rehabilitation. International Handbook of Neuropsychological Rehabilitation, ed, Christensen and Uzzell. (p. 145). Kluwer Academic/Plenum Publishers, New York).

February 2001

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