Select Committee on Health Third Report


The Health Committee has agreed to the following Report:—



1. Head injury is the foremost cause of death and disability in young people. In an age of increased motorisation and violence, head injury is a healthcare problem which is not going to go away. There is a growing population of head-injured people in this country, as improved medical techniques have led to many head-injured people now surviving their accident and living into old age, with a normal life expectancy. However, a head-injured person is likely to require long term rehabilitation to live his or her life in society.

2. We decided to undertake a short inquiry into head injury rehabilitation when we received some alarming stories about this area of service provision from individuals and from Headway - the Brain Injury Association. Our call for evidence attracted such a large quantity of material for such a short inquiry that it became obvious that this was an area of some considerable concern to a great many people. As such, it would benefit from a wider inquiry, but time was not available to extend the inquiry. We have managed to look at some key issues, but we believe that this is an area which would benefit from a wider inquiry.

3. Our terms of reference were as follows:

    "The Committee will examine the availability, organisation and resourcing of rehabilitation services for head-injured adults following medical stabilisation. The Committee will consider rehabilitation services in the hospital and in the community, and wishes to establish the extent to which agencies in the statutory and non-statutory sectors collaborate to provide seamless care."

By a happy coincidence, the single oral evidence session of our inquiry on 15 March took place in National Brain Injury Week, "which hopes to draw attention to the problems that may face the million patients each year who attend hospitals with head injuries, and the families of those patients".[8]

4. We heard oral evidence from Mr Kevin Curley, the Chief Executive of Headway-The Brain Injury Association, Ms Jenny Garber, Mrs Angela Hicks, Mr Peter Wheeler, Dr Lynne Turner-Stokes, Director of the Regional Rehabilitation Unit at Northwick Park Hospital, Mr John Pope, Chief Executive of The North West London Hospitals NHS Trust, Dr Keith Andrews, Director of Medical and Research Services at the Royal Hospital for Neuro-Disability, Putney, Dr Brian Moffit, Medical Director of St Andrews Hospital, Northampton, Yvette Cooper, MP, Parliamentary Under-Secretary of State, Dr Sheila Adam, Deputy Chief Medical Officer and Ms Judy Sanderson of the Department of Health (DoH).

5. We also received around 100 written memoranda, which were extremely helpful. We are grateful to all who have submitted written and oral evidence.

6. We would also like to thank our specialist advisers, Lindsay McLellan, Professor of Rehabilitation at the University of Southampton, Dr Neil Brooks, Director, Rehab without Walls and Mr Chris Vellenoweth, an independent adviser on health policy and former special projects manager, NHS Confederation, for their invaluable contribution to our inquiry.


7. The following definitions are widely used in this area.
Head Injury: often used synonymously with Traumatic Brain Injury (TBI). Strictly, however, not everyone who suffers a head injury will sustain a brain injury.

Traumatic Brain Injury (TBI): injury to the brain caused by trauma, ie. a blow to the head.

Acquired Brain Injury (ABI): "An injury to the brain that has occurred since birth... The term acquired brain injury includes traumatic brain injuries... and non-traumatic brain injuries... the term does not include brain injuries that are congenital or produced by birth trauma".[9]

Rehabilitation: "the use of all means to minimise the impact of disabling conditions and to assist disabled people to achieve their desired level of autonomy and participation in society".[10] Rehabilitation may be needed at any point in a patient's care pathway, may be long term, and spans a wide variety of interventions aimed at relieving both physical and cognitive difficulties.

The Glasgow Coma Scale: the assessment tool widely used to classify the initial severity of traumatic brain injuries. This, together with other criteria, allows subjects to be categorised as being in a Vegetative State, or as having had a Severe Injury, Moderate Injury, or Mild Injury, based on the level of responsiveness of the patient after initial resuscitation.

There is also a Glasgow Outcome Scale that categorises subjects who have recovered into very broad groups mainly according to physical functions but there are limits to its usefulness; patients classified as having made a 'Good Recovery' may still have considerable cognitive and behavioural deficits and be unable to work.[11]

Incidence and prevalence of head injury

8. Head Injury is the commonest cause of death and disability in young people and children, and occurs mainly as a result of road traffic accidents, falls and assaults. The head-injured population is predominantly young and male, although elderly people also suffer above average incidence.

9. Establishing the numbers of head injuries every year, and the number of people disabled as a result, not to mention the overall numbers of head-injured people living in the population, is not easy. The data systems that are used to identify figures are inadequate in a number of ways. Numbers are based on hospital admissions and diagnoses in hospital. This misses the many mildly head-injured people who never attend Accident and Emergency (A&E) in the first place, but who may still be adversely affected long term. Initial diagnosis is also not a reliable predictor of long term outcome, so analysis by diagnosis does not necessarily represent an adequate profile of actual incidence of long term problems.

10. Even the data collected by hospitals are not necessarily accurate in terms of admissions. The data on hospital admissions are based on the classification of the patient at the hospital, according to the International Classification of Diseases (ICD) 10 Codes. Some have cast doubt on the reliability of this method of classification to identify victims of head injury, including Shoumitro Deb, clinical senior lecturer and Honorary Consultant in Neuropsychiatry at the University of Wales College of Medicine, who concluded from a research project he undertook, that:

    "By using ICD-10 codes, less than 50% of all head injury admissions could be detected... It is worth mentioning that the ICD codes are often completed by the less experienced trainee doctors working in the unit and sometimes by other non-medical staff".[12]

11. Confusion can also be caused by attempting to separate incidence of Traumatic Brain Injury from Acquired Brain Injury. Indeed, a recent Parliamentary written answer to a question on Acquired Brain Injury statistics found the DoH itself quoting Traumatic Brain Injury statistics.[13]

12. We put our concerns about the robustness of the data to Yvette Cooper MP, Parliamentary Under-Secretary for Health. She told us "We would accept that there are difficulties with the figures and there are difficulties with the way in which they are collected or the diagnosis is made at the time".[14] We recommend that the DoH finds ways of improving the methods of data collection on incidence, prevalence and severity of head injury and subsequent disability, as a matter of urgency. In particular, we recommend that all health authorities are required to collect data on head injury and that an estimate of the incidence and prevalence of head injury informs planning.

13. With all these qualifications, some estimates of numbers can be made. The Department of Health's memorandum states that more than 1 million people attend A&E with a head injury every year and that of these 100,000 need inpatient treatment. It makes no estimate of overall prevalence - the total number of people living with the effects of head injury at any one time. The Department of Health's National Traumatic Brain Injury Study (see paragraph 35) estimated that over 100,000 people a year are discharged from hospital with a diagnosis of head injury, at least 2000 adults a year suffer serious impairments which remain with them forever and prevalence was between 50-75,000 in 1990.

14. The British Society of Rehabilitation Medicine (formerly the Medical Disability Society) says that incidence has changed little since their report of 1988 - according to this report incidence is 300 per 100,000. The report divides this up into annual rates of 8 cases of severe head injury per 100,000, approximately 18 moderate injuries per 100,000 and between 250-300 mild head injuries per 100,000. However, deprived urban areas have higher rates and incidence is up to four times higher amongst children and elderly. Assuming a UK population of sixty million, this would make for national incidence figures of 180,000 per year. Figures for prevalence of disabled survivors of head injury are estimated to be100-150 per 100,000 or 60,000 in the population as a whole.[15]

15. The most recent relevant study, by Thornhill et al, looking at the incidence in Glasgow, suggests a much higher incidence than the DoH estimate (about 4.5 times higher) and also records a much higher level of unrecognised problems on discharge than had hitherto been supposed.[16]

16. Whatever the exact numbers, it is clear that head injuries are common, and that prevalence is high and rising. Most head-injured people are young, and as life expectancy is usually unaffected, there is a growing population of people living with the long term consequences of head injury. In addition to this there is the suspicion that the identified group misses out a significant number of mildly head-injured people, the long term problems of whom are only now beginning to be identified.

17. The reasons for the growing population of head-injured people are fairly simple. Apart from increased use of the motor car and the numbers of assaults, medical advances since the 1970s have meant that head-injured people who used to die as a result of their injury are now surviving in large numbers. The group of needy people has therefore not been great until relatively recently, and it may be for this historical reason that the statutory services are so ill-designed to cope with their needs.

Effects of head injury

18. The Glasgow Coma Scale is the tool used most widely to assess the severity of brain injury, by the level of responsiveness of the patient after initial resuscitation (see Definitions). However, this classificatory system does not accurately predict the long term consequences for the head-injured person. An individual having suffered a mild head injury may suffer symptoms for the rest of his or her life; another who has been severely injured may make a good recovery. This causes problems planning services for head-injured people.

19. At the extreme end of the scale, the consequences of head injury are death, persistent vegetative state or severe physical and mental disablement. For the large majority of victims, however, on a sliding scale, effects include cognitive, emotional and behavioural difficulties including impairments of memory, understanding, judgement, and control over emotions and behaviour. While some may be physically disabled, the large majority of victims have only these "hidden" disabilities, which are less easy to observe, and as a result, lead to misunderstanding. One head-injured person described this in evidence in the following terms: "I don't know who I am - there are two persons - one before the accident and one after the accident - and they don't seem to be the same person and they don't integrate with each other".[17] A head-injured person may find it very difficult to relate to people, to carry out tasks which make him or her employable, and to remember life before the accident, and may well seem a different person to those around him or her. The patient may even lack the insight to understand the seriousness of what has happened to him or her; Mr Peter Wheeler, who suffered a head injury in 1994, told us that "the first year I was not well enough to do anything. My memory loss was terrible and I was not well enough to appreciate the seriousness of the accident".[18]

20. The results of head injury are not, however, limited in impact to the head-injured persons themselves. The family and friends of the individual, especially where they take on the main caring roles (as is often the case in the absence of satisfactory statutory help) are placed under immense emotional - and often financial - strain as they struggle to look after and relate to a person who may be very different from the one they used to know. Moreover the stress on families after severe injuries tends to increase progressively for at least the first seven years after the injury. Thus the impact of a head-injured parent or sibling upon children in the family can be immense: Ms Jenny Garber, a brain injury case manager with a background in social work, told us "What you are looking at is later on in life disrupted schooling, disruptive behaviour and quite serious signs of stress". She added that she did not know of anywhere in the country that would focus on these children's needs.[19]

21. Mrs Angela Hicks, who came to give evidence to us about her experiences since her husband's head injury in October 1999, emphasised to us the importance of involving the family in the rehabilitation of the head-injured person, for the patient's and their own sake:

    "you have to recognise that ultimately the family is hopefully going to take care of the person and work with the person that has the head injury. If you exclude them and do not involve them then you are likely to set up long term problems... the family is part of the solution, not part of the problem".[20]

22. Where family support is not available, or gives way under the emotional burden, statutory services are often inadequate, leading to family break-ups, divorces and the head-injured person becoming homeless or even entering the criminal justice system. Such is the lack of understanding of head injury, and the "hidden" nature of its symptoms, that victims often do not receive the recognition and help they need. We recommend that the statutory services re-evaluate their procedures to ensure greater involvement of the families of head-injured people in the person's recovery and rehabilitation, and the provision of support systems for the families independently of the treatment of the head-injured person.[21]

Treatment and care pathways

23. It is important to recognise that just as there are different levels of severity of brain injury, so these different levels will require correspondingly different levels of treatment. While the most severely injured will require a high volume of rehabilitation, they will show less gain for it; the greatly larger number of victims of moderate and minor head injury also need treatment, albeit at a lower level, and are likely to respond better. Providing head injury rehabilitation must not be a case of disenfranchising one group to help another: different levels of treatment must be provided for different levels of need. Moreover, a proportion of those with mild and moderate injury, if missed, are likely to experience long term problems which will be much more difficult and costly to resolve later down the line.

24. Those who have suffered a severe accident usually first access the statutory services in the A&E department of the nearest hospital. Many, especially if their injury has been caused by a road traffic accident, have other, physical injuries which need to be dealt with on admission, and as a result may end up on general or orthopaedic wards. The recent report from the Royal College of Surgeons on the management of head injury describes this course of action as very undesirable, since staff on these wards are not trained in the management of head-injured people, and the other (more apparently immediate) care needs of the person may lead to staff missing or failing to give the right priority to the treatment of the head injury.[22] The difficulty of accurately ascertaining the level of brain injury that has occurred may also lead to mistakes. Angela Hicks described to us the consequences of inappropriate placement and treatment on her husband: "He then spent four months on a general hospital ward where his emotional vulnerability was acute because the nursing staff did not have the time, expertise or knowledge to know how to deal with a severely brain-injured patient".[23] She described this ward in the following terms: "It was loosely termed the rehabilitation ward. It was predominantly elderly people. I could not really match the word 'rehabilitation' with the death rate".[24] It is imperative that people with a suspected brain injury are assessed by specialist staff and nursed in a location appropriate to their needs.

25. The early stages of recovery from head injury are the optimal time for rehabilitation interventions which may not be possible in a general ward, and which may even be compromised by staff who are not trained in dealing with brain-injured people. It is much better if head-injured people are transferred to rehabilitation beds as soon as possible, as recommended both by the Royal College of Surgeons' report and by the report of the British Society of Rehabilitation Medicine. The resources needed for this stage of treatment have been clearly set out in the report of the Royal College of Physicians, Medical Rehabilitation for People with Physical and Complex Disabilities, of May 2000. We recommend that guidance should be issued to all acute trusts to ensure that head-injured people are treated, as soon as possible after medical stabilisation, in appropriately resourced rehabilitation beds where specialist rehabilitation staff can care for them and begin their rehabilitation interventions. This may require extra resources, but we believe this course of action will yield long term savings, as well as benefits to patients.

26. After medical stabilisation and the end of surgical or medical interventions, depending on the perceived severity of the head injury, the head-injured person is transferred to a rehabilitation unit, or simply discharged into the community. There may be several problems at this stage. People are often discharged when in fact they need further inpatient treatment in a unit. Long delays may occur before a move to an intermediate unit can be effected, with the result that patients receive inappropriate care at a crucial period for rehabilitation interventions, and also that acute beds are

"blocked" for other patients.[25] Many of those who are simply discharged are lost to the statutory services, despite the fact that they may well develop long term needs, as they are not always followed up and there is often no system whatsoever to offer ongoing rehabilitation for them in the community.[26] We recommend that all health authorities and trusts plan care pathways for head-injured people so that they can move through the system as quickly as is appropriate, thus releasing acute beds for other patients and increasing their own potential to improve. It may also be necessary to increase capacity of specialised staff. To do these things health authorities and trusts must improve their data on the incidence and prevalence of head injury in their catchment area, by better collation and maintenance of data (see paragraph 12).

27. Even something as simple as the provision of information to head-injured people and their families about how they can expect life to change following a head injury, is rarely made available by statutory services to those who are discharged straight to their homes. The DoH's evidence remarks that:

    "systems should be in place to identify such cases. Good practice solutions include issuing leaflets giving advice... and creating a register of head-injured patients".[27]

28. In practice, it is usually left to charitable bodies to pick up whatever individuals they can before people are forced into crisis situations by their problems, much later along the line. Headway National in fact run an inquiry phone line which receives more and more inquiries every year, almost all of which are from people contacting Headway for the first time, and nearly a quarter of which are from professionals, mainly from the statutory sector, trying to find out about available services.[28] Angela Hicks echoed many of our written memoranda when she told


    "I found it was very rare that information was ever offered to me within the health service, social services setting. I had to seek it; I had to find it; I had to make appointments; I had to badger people".[29]

She added:

    "I felt extremely excluded; I felt that I had very poor information. There was a lack of communication between professionals and to me. I felt extremely isolated. That is a theme which has run right through from the beginning to where we are now and continues to date. The most supportive area I have had has been Headway which has been the only consistent source of information and support and advice throughout our experience".[30]

We recommend that the Government requires the statutory services to improve their supply of information on head injury to head-injured people and their families; such information should be given to these people in written and verbal form during their stay in hospital, should be available to GPs and should include the literature produced by Headway-the Brain Injury Association.

29. As patients recover they face progressively more difficult life situations and choices each of which may need a different pattern and emphasis of treatment. Although it has been claimed that there is an optimal period of two years for effecting improvement in the head-injured person's condition, the many patients with moderate or severe injuries who have not fully recovered by this stage will require continuous monitoring and intermittent specialist input for considerably longer in order to make a good transition to independent living in the community. With this in mind, the effect on a head-injured person of being discharged into the community without any long term care plan or any system in place to deliver this, can be devastating. The adverse consequences on the patient's morale and self-image, and upon their family and social support networks, can permanently destroy the capacity of the individual to realise their rehabilitation potential. We recommend that the acute sector takes responsibility for planning the onward care journey of a head-injured person on discharge from the hospital, and issues care plans to patients and families of patients which make clear where they should go next.

30. The head-injured person's problems may be extremely diverse, and no two cases will have the same needs. Moreover, it is difficult to predict the long term needs of a head-injured person from the acute stage of treatment; assessments need to be made and treatment adjusted on an ongoing basis. While most rehabilitation provided by the statutory services is in terms of a finite care package, many head-injured people need life long support and more than one rehabilitation intervention in the course of their lives.[31] For these reasons, the rehabilitation interventions available to a head-injured person after discharge from the hospital need to be in the form of a multi-disciplinary outreach team. For those people with a head injury who did not attend hospital in the first place, these services need to be accessible too, and known to GPs. The lack of community support and care networks to provide ongoing rehabilitative care is the problem area that has emerged most strongly in the written evidence (see paragraph 49).

31. People with more serious problems may be referred to a private tertiary facility. Many inappropriate placements are made, for example young people are put into old peoples' nursing homes, and adults put in nursing homes which do not have the expertise to manage brain-injured people. According to the charitable organisation Leonard Cheshire, residential placements given to head-injured people are "over 70% inappropriate".[32] The Association of Serious Injury Solicitors makes the point that care homes are of variable quality, citing one care manager's report that a girl in Persistent Vegetative State became pregnant while in a Young Disabled Unit.[33] Services for those with severe behavioural problems are even fewer and further between - as Headway East London puts it, "it is certainly my experience that health authorities are very reluctant to purchase these services".[34] We recommend that health authorities and trusts plan care pathways for seriously head-injured people and locate tertiary facilities which they can be sent to if need be, without delay. These facilities must be well-regulated to ensure standards of care are high and appropriate for head-injured people. Patients should only be referred on to such facilities after skilled assessment by specialised rehabilitation staff with expertise in brain injury, in the hospital.

32. Problems also occur frequently at the interface of treatment for head-injured people and mental health facilities. Some head-injured people may be treated, inappropriately, as psychiatric patients, and medicated in a way which hinders the progress of their rehabilitation. Conversely, head-injured people who have psychiatric problems in addition to their head injury find it difficult to access mental health services. Mental health services, including medication, should be offered to head-injured people when, and only when, appropriate, and such intervention should be directed by a neuropsychiatrist.

The importance of rehabilitation

33. Rehabilitation is concerned with helping an injured person to recover, as far as possible, the functions that they used to have before the injury. Where this is not possible, it aims to help the individual to achieve the highest possible level of independence. Rehabilitation may be needed long term simply to help a person to maintain a level of improvement. Mr Wheeler, whose accident was nearly seven years ago, told us, "though I have made a good recovery and I look a hundred per cent to everybody around this table, it is very important to have ongoing treatment and care... I feel fine but there are still a lot of psychological problems there".[35] He went on, "the ongoing help provided by Headway is essential. I can go back to them because although my confidence is probably about 80 per cent, it is still very brittle and I need that support".[36] Rehabilitation goals will therefore be different for every individual depending on their particular problems and capacity to improve. The need of the majority of head-injured people is not for physical rehabilitation but cognitive rehabilitation.

34. Despite the detailed guidance provided by the Royal College of Physicians in its report of May 2000, it appears that the importance of rehabilitation has not really yet been recognised by many members of the medical profession in this country. It is perhaps unsurprising, therefore, that it also appears to be hardly recognised by the Government and not given appropriate prominence in the priorities of health authorities. Evidence of the efficacy of rehabilitation is difficult to evaluate, given the relatively small numbers of people involved, the diversity of rehabilitation interventions and the difficulty of establishing measurable and consistent outcomes. However, Dr Turner-Stokes, one of the witnesses before us, has published a critical evaluation of the evidence of the effectiveness of rehabilitation, in which she was able to conclude: "We can effectively dismiss the statement: 'There is no good evidence that rehabilitation works'".[37] She told us in oral evidence:

    " There is good evidence that post-acute rehab can both reduce length of stay [in hospital] and increase functional independence. There is evidence for cost effectiveness in randomised control trials and evidence that more intensive therapy can both reduce length of stay and produce net cost savings".[38]

35. The DoH maintained in its evidence to us that good evidence of the efficacy of rehabilitation for head-injured people is not available. It appears to base this proposition almost entirely on its own study, the National Traumatic Brain Injury Study.[39] Many witnesses, however, claimed that this study was very flawed and did not represent a reliable standpoint from which to argue the weakness of scientific evidence on rehabilitation. The study describes itself in the following terms:

    "In 1992, the Department of Health provided seed-corn funding for initiatives at twelve National Health Service sites to develop community rehabilitation services for adults who had suffered a traumatic brain injury. Funding was for five years, and ten of the sites participated in a case register exercise in order to chart the progress of patients and the rehabilitation services which were delivered. This would yield data for an observational study designed to examine the relationship between the clinical severity of patients' injuries, the interventions provided and outcomes at 18 and 36 months. If possible conclusions were to be drawn about efficient management and scale of services.[40]

36. As the DoH points out in its evidence, the researchers were "unable to establish a statistically significant link"[41] between the amount of rehabilitation input given and the outcome for the patient. However, according to our evidence, this study would never have been able to deliver this sort of evidence because of its basically flawed design. Dr Turner-Stokes was eloquent in her description of its flaws -

    "it was a very poorly designed study in very many ways... If you take a mixed bag of head injuries, anything from two months to ten years down the line, and you collect some arbitrary measures like sometimes GCS [Glasgow Coma Score] or sometimes post-traumatic amnesia and sometimes you do not collect those at all because the information is not available, and you collect a certain amount of information on records of therapy but probably not a lot and none of that in relation to actually what the patient might need, and you may collect those measures on three different occasions bearing no relationship to the time of the injury... and you bung it in a database and you see what comes out then the answer is not a lot".[42]

37. Dr Keith Andrews of the Royal Hospital for Neuro-disability qualified this by describing some of the things which did come out of the study, but concluded "the fact that we managed to demonstrate anything at all I think is amazing".[43] Dr Sheila Adam, the Deputy Chief Medical Officer, conceded, "To my mind it is not surprising that the project did not reveal the results, did not prove the hypothesis it was set up to prove"[44] because of the impossible nature of the task it set itself , and Ms Sanderson, Team Leader of Neurology and Disability services policy development, told us that "we were not quite so focused on things like clinical evidence in 1992" and "were we to set it up now we would set it up in a different way".[45]

38. What is disturbing about this is not that the study was not able to say much about what it had been set up to look at; people seem to agree that some useful things did come out of it. What is disturbing is that, even though the DoH agree the study was not properly designed to elicit answers about the relation between rehabilitation and outcomes, it seemed to insist in evidence that, because the study had not revealed a statistically significant link, therefore there was no statistically significant link. If it is accepted that the study could never have shown a link, then the fact that it does not is immaterial. Absence of evidence is not the same as evidence of absence.

39. Moreover, the Department did not seem to think there was evidence anywhere else to show the significance of rehabilitation. The only research they referred to in written and oral evidence was the National Traumatic Brain Injury Study, the recent report of the Royal College of Surgeons, and the report Safe Neurosurgery 2000 from the Society of British Neurological Surgeons.[46] While these last two reports are no doubt useful on the acute end of management of head injury, the long term rehabilitation of head-injured people is not the preserve of surgeons. As we were told in evidence of the existence of good research evidence on head injury rehabilitation, which is summarised in Dr Turner-Stokes' Clinical Effectiveness in Rehabilitation, we find it surprising and alarming that the DoH did not refer to any of this material; did not seem aware of it even. It was particularly surprising that the DoH did not even mention two recent reports specifically about this subject area: the Royal College of Physicians report Medical Rehabilitation for people with physical and complex disabilities, and the British Society of Rehabilitation Medicine's report Rehabilitation after Traumatic Brain Injury. While more research is certainly necessary, our impression was that enough already existed for more to be done by the Government to support, provide and develop rehabilitation services for this group. Dr Turner-Stokes affirmed:

    "if we can take the lead from stroke research in particular, where we now know there is good evidence that rehabilitation in another condition that gives you severe complex neurological disability... is an effective way of managing that, then I would say that looking at future evidence in head injury you would have to take the null hypothesis that... says 'We have to show that it does not work in head injury' because there is every reason to suppose that it should".[47]

40. In 1995, the Welsh Affairs Committee conducted an inquiry into Rehabilitation for Severe Head Injuries in Wales.[48] This report collected together a useful set of data and experiences regarding the treatment of head-injured people. The Minister told us that this report had had a minimal impact on services in England. While we would not expect the DoH to have implemented in England the report's recommendations for Wales, the report is a useful collection of facts also pertinent to head injury rehabilitation in England, and the DoH did not appear to have used it or even be aware of what the report said.

41. Despite the amount of research which has been already carried out, more research is "urgently required" and the NHS R&D budget does not at present take account of this.[49] There is no research grant funding body allocating funding solely for research into traumatic brain injury, which makes pilot and start-up projects, which may lead to more major programmes, more difficult to initiate than for other complaints.[50] We recommend that the DoH allocates more of the R&D budget to research into traumatic brain injury rehabilitation.

Multi-disciplinary rehabilitation

42. Rehabilitation for head-injured people spans a wide spectrum of possible interventions, given that the needs of different individuals vary widely, and change over time for each individual. Interventions needed may include any or all of the following: speech and language therapy, physiotherapy, cognitive and behavioural therapy, social support, neuropsychology, changes to the home and installation of certain equipment, and vocational rehabilitation. Individuals may need various interventions over the years as crises emerge in normal life. It follows from this that a multi-disciplinary team will be needed to be able to attend to the disparate needs of this group of people. The rehabilitation needs of head-injured people overlap with those of sufferers of other disorders and complaints, and an effective way of targeting the majority of these needs would be by grouping provision for several conditions together, in a generic rehabilitation service. Many have compared rehabilitation for TBI with stroke rehabilitation - however, Mr Curley told us that "if you started to compare where we are in terms of services for people with traumatic brain injury, say, to people who have had strokes, we are light years behind".[51]

43. Some head-injured people who go back to live in the community, and for whom family support is not an option, also have sheltered housing needs. The recent Government initiative Supporting People may exclude head-injured people, as it is aimed at groups identified according to Social services categories-which have traditionally been difficult for head-injured people to access-people with "Learning Disability", "Mental Ill Health", "People with Physical Disability" and "Older People".[52] In Sussex, Health and Social services have collaborated to set up a Head Injury Housing Scheme for those with and without compensation monies - a project which was referred to as an example of best practice in the annual NHS review of 1994-5.[53]

Vocational rehabilitation

44. Many head-injured people find it very difficult to return to employment after their injury. Mr Wheeler explained to us some of his psychological difficulties when he attempted to return to his former job:

    "The problems at work were the shop floor. Everybody I felt was against me, which they were not... I just found it impossible to cope with the work place and the bickering and the backbiting that you get everywhere I think in the work place. I thought it was all being aimed at me".[54]

In psychological terms, return to some kind of work is very important for the head-injured person. Moreover, as disabled people on benefits and requiring various assistance from statutory agencies over their lives, head-injured people can incur large costs to the state. It is clearly in the interests of all concerned that as many people as possible are helped back into employment, and in fact this is possible for a significant proportion of people. Indeed, Rehab UK, a charity with several vocational rehabilitation centres around the country, places "50 per cent of clients into paid competitive employment, and a further 20-25 per cent into positive community based outcomes". The charity estimates that "completion of our specialist programme will generate a saving to the Exchequer in less than a year after the client has finished the programme". However, the charity receives three referrals for every one place and, despite the success rate, several of its centres are at risk of closure due to lack of financial support from statutory agencies.[55] In the NHS, Mr Curley told us about the service in Aylesbury Vale, where

    "the community head injury service... for the past three years has co-operated with the Employment Service, with social services and with Headway... and no less than 64 per cent of the patients with severe head injury who have been through their vocational rehabilitation programme in Aylesbury Vale went on to either full time or part time employment and were still in employment at the one-year follow up stage... the NHS awarded a Nye Bevan Award to the Aylesbury Vale service last year."[56]

There seems no good reason why this good practice cannot be developed and spread.

45. There is very little vocational rehabilitation available in the UK. This is partly because the NHS does not see return to work as a health goal. The Employment Service has some provision for helping disabled people, through Disability Employment Advisers, but according to a memorandum from a former Head of Profession (Employment Rehabilitation Service: Department of Employment Group) the Disability Service within the Employment Service is wholly inadequate for addressing this kind of need.[57] Mr Curley of Headway told us:

    "Even when you have disablement employment advisers and people go through the Employment Service process there may be a lack of understanding of exactly what that client is going to need in terms of structuring a work place to make it viable for them. Secondly, there is a really difficult problem with the length of work placements that the Department of Employment can find for people attempting to return to work because they work on a six-week placement maximum. That is barely long enough for a person with cognitive difficulties to have got their way round that system at all. Then they have to leave and they cannot return to that place, they have got to go to another one, so you start the process all over again".[58]

46. The DoH evidence describes how DoH, DfEE and DSS are planning Job Retention and Rehabilitation Pilots to test ways of helping people with prolonged illness or disability to remain in their jobs and asserts that "this will, of course, benefit people following head injury".[59] It is to be hoped that the departments will collaborate closely with statutory and charitable agencies such as Rehab UK, which already have expertise in getting head-injured people back to work. We recommend that the Government learns from the work that has already been done on helping people with complex neurological disorders back into work, and formulates vocational rehabilitation services with sufficient flexibility to be of real help to these people as well as those with physical disabilities.

47. For those who are not able to return to any kind of work, the eligibility criteria for Disability Living Allowance and Incapacity Benefit/Severe Disablement Allowance seem to take insufficient account of the complex difficulties of a head-injured person.[60] Some head-injured people have even been put through the All Work Test unnecessarily after the cancellation of long term Incapacity Benefit, as the assessing agencies do not understand the nature of neurodisability, and the benefits system is not designed to take account of head injury.[61] Mr Curley from Headway explained:

    "all too often the Benefits Agency shows it has very little understanding of brain injury. This is particularly noticeable where general practitioners carry out assessments for disability living allowance. All too often we hear of cases where people with a brain injury are either refused a disability living allowance or have been receiving it and then the allowance is withdrawn. The commonest problem there is that the assessor and the assessment process do not enable the person to express the huge cognitive problems they have got".[62]

48. We recommend that those assessing brain-injured people for disability living allowance have specialist skills which enable them to understand the complex combination of physical, cognitive and behavioural impairments characteristic of this type of neurological disability; and that the assessment process is adjusted to allow the input of a patient's advocate, be it a carer, relative or case manager.

Rehabilitation in the community

49. Different models for the delivery of rehabilitation interventions exist. Patients can be grouped together in regional centres which allow for the pooling of expertise amongst professionals but put pressure on families and patients who have to travel long distances to reach the centre, and pose problems for the transferral of skills learnt by patients in the centre back to their home environment. The alternative is for local provision of fairly generic services, with only the most specialised services being located in regional or subregional centres. This would be a step-up, step-down model, so that people can move between the tiers as their needs change, accessing specialised help in a centre when they need it and returning to the community when they can. The large majority of head-injured people do not need residential placements or highly specialised inputs, but rather support systems of information, social interaction and home-based help. Many health authorities, however, do not provide any such service, and, according to information provided by Southern Derbyshire Head Injury Service, "people with head injuries do not fit in well with local authority provision in day centres, as these services can be inappropriate to their needs".[63]

50. Ms Sanderson, from the DoH, told us, "People need rehabilitation [to get] to the best state of function they possibly can, but once someone has been rehabilitated and goes back home they then need the support within the home. This support should look to give a good quality of life, to try and minimise some of the deficits people suffer after brain injury".[64] She seemed to imply that rehabilitation was a short-term intervention which could be delivered away from the home, as a closed episode of treatment, before the patient was discharged from a clinical setting. We find this very disturbing, as it seems to demonstrate a lack of understanding of the nature and the time-scale of the rehabilitation that many head-injured people need. Rehabilitation is carried out in any setting, but if a person is "rehabilitated" away from his or her home, it is much more difficult for them to carry over what they have learnt once they go back home: the "support within the home" is therefore a key part of rehabilitation, not a separate caring process. Rehabilitation is also an ongoing process which is rarely tidily finished but needs to go on long term, perhaps sporadically, and flexibly as a person's rehabilitation needs change. The phase of rehabilitation which is so often missed out, according to our evidence, is long term rehabilitation carried out in the patient's community and home, and the fact that Ms Sanderson did not seem to classify this kind of service as "rehabilitation" at all casts worrying messages about what the DoH think they are providing and need to provide for head-injured people. We recommend that health authorities are required to provide rehabilitation in the community which includes the needs of neurologically disabled people who have a combination of physical and cognitive impairments. We further recommend that DoH takes responsibility for the long term rehabilitation of head-injured people and consults with members of the professional rehabilitation community on the best shape of such services.

51. Those who have been discharged home without any follow-up and for whom a community service does not exist, may find it very difficult to access whatever limited rehabilitation possibilities that do exist as outpatient facilities from a hospital or unit. This is because most GPs have a very limited understanding of the realities of head injury and its consequences, and so may not pick up on the needs of head-injured people. We recommend that GPs are made aware of the nature of head injury and of the services which are available to cater for head-injured people, and that these services are made accessible through primary care not just through emergency acute care. Long term rehabilitation plans need to be co-ordinated by clinicians in the acute sector, whose responsibility they should be as part of discharge planning. We recommend that every head-injured person admitted to hospital should leave hospital with a clear care plan mapped out for him or her. The trust will need to be able to access the services of a manager with a remit to co-ordinate brain injury services (see paragraph 60) in order to plan services in this way.

52. Much community rehabilitation work would seem logically to fall within the remit of social services departments. It appears, however, that social services are ill-equipped to take on this responsibility. Ms Garber told us that "social services departments tend to have very limited understanding of brain injury".[65] Mr Curley described how Headway had conducted a survey of social services departments to establish the level of expertise for the handling of brain injury:

    "Headway wrote to every social services department in England in the second half of last year and we got a 62 per cent response rate. In response to the question, 'Do you have one or more specialist brain injury social workers?', the answer was yes in the case of 27 per cent of those departments. However, when you analysed those responses it turned out that something like half of those people are in fact social workers within physical disability teams with quite widespread caseloads. Our best guess would be that something like 13 per cent of social services departments in England have some kind of specialist social worker".[66]

53. One reason why social services provision is so uneven, is the ill-defined nature of head injury and lack of good planning mechanisms for provision of services. The Social Services Inspectorate Report of 1995 noted that most social services departments route brain-injured people inappropriately through physical disability services.[67] However the report did not specify which department would provide a more appropriate route. The two main alternatives would be mental health services and learning disability. The route taken impacts on the service the individual is likely to receive, in the opinion of Guy Soulsby, secretary of the brain injury social work group:

    "in a recent survey I did of the type of services members of the brain injury social work group can offer, I found that those from physical disability teams were more likely to be limited to providing practical help within the home whereas those from mental health teams were more likely to be able to offer support to help people to do a wider range of things in and outside the home. It is this type of enabling support which is, in my view, more appropriate for most people with a head injury".[68]

54. The problem with this, however, is that patients are often disinclined to engage with mental health services because of the social stigma felt to attach itself to psychiatric problems.

55. We recommend that social services departments use an additional classification of user group, to plan services, which explicitly includes complex neurological problems such as those resulting from head injury. We believe that the Community Care Plan should have a section within which these problems are explicitly considered.

Organisation of services

Case management and co-ordination

56. One of the most difficult problems for head-injured people and their families is the number of different services they have to access and communicate with along the care journey. There seems to be so little co-ordination of services that patients and their carers, who are likely to be under a great deal of stress, often have to rely on their own initiative to find out about and attempt to access services.

57. There are two strands to this problem - inadequate management of an individual patient's rehabilitation package, and inadequate management of the district's services and resources. It is no good having lots of facilities if they are not co-ordinated and if care pathways are not planned. As the Chair of Headway Bristol told us of the service in his area, "it sounds like a good service... but the fragmentation makes a seamless service almost an impossibility". A recurrent problem in the evidence is the elusiveness of health authorities when patients and families are trying to communicate with them to secure the treatment they need. Headway Bristol also described how clinicians too experience this frustration: in Bristol clinicians at the Neurosciences department at Frenchay Hospital prepared and researched a strategy plan for brain injury and presented it to Avon Health a year ago but it has not been implemented and there is a feeling of great frustration at the health authority's unwillingness to communicate.[69]

58. The first problem might be mitigated through use of a case manager. This means that on presentation, each head-injured person would be assigned to an individual who would co-ordinate and manage their programme of rehabilitation following discharge, through the maze of multiple agencies who may be approached to provide rehabilitation interventions of various kinds. This would also give the patient an identified point of reference throughout his or her care journey, someone with responsibility to help them. Ms Garber described her experience of such a system in Sheffield; a team of two people

    "who met the family at point one, as soon as possible after injury and then were able to follow across hospital boundaries, so you were not tied to a particular hospital; you could move with your client, through to outpatient rehabilitation and then on into the community. You will appreciate that that actually gives you as the worker a good idea of the resources of each of the service and treatment areas that your client is going through but enables the family to have a person to help them through with transitions. You have a person who can manage those transitions and referrals on".[70]

59. The case management system could have marked benefits for families too - "if there was one single thing which would greatly enhance the long term outcomes of people with brain injuries it would be the provision of a Co-ordinator to support their families from when they first enter the medical care setting". [71] It does not appear to matter from which professional discipline the case manager comes; however they should not be compromised by the priorities of their own department. To provide such individuals, is, however, a considerable commitment; in Ms Garber's words:

    "Where you come up against a great difficulty is the length of time that the difficulty is going to be with the client. We are talking about a lifetime access to services, not necessarily of the same intensity".[72]

We recommend that health authorities, trusts and local authorities are required to put in place a case management or equivalent system which gives head-injured patients and carers an identifiable guide and advocate through the whole care pathway.

60. The second problem could be solved fairly straightforwardly by having a named manager in every NHS trust with responsibility for rehabilitation services for head-injured people: "where there are clearly identified individuals with properly defined roles the relationship between sectors improves drastically".[73] Obviously, this responsibility could be grouped with another service area, such as generic rehabilitation services for other user groups - the important thing is to have someone taking responsibility for co-ordinating all the agencies involved in providing rehabilitation services to patients of the trust. The present situation, conversely, seems all too often to be characterised by agencies passing the buck and vulnerable people falling through gaps between agencies, unless they are spotted and rescued by charitable organisations. We recommend that every NHS trust should be required to identify a named manager with responsibility for rehabilitation services for head-injured people. He or she should liaise with services, case managers and patients to help co-ordinate the service with the need.

61. We received evidence from the Acquired Brain Injury Co-ordinator of East Sussex, who describes his job as "aiming to assist individuals access appropriate services, inform providers of shortcomings and collate information".[74] His remit is not restricted to TBI but includes other brain injuries with similar morbid conditions and symptoms, which seems a sensible way of using finite resources. This model of service is referred to by other memoranda with some envy.[75] The Bodily Injury Claims Management Association: Code of Best Practice on Rehabilitation, Early Intervention and Medical Treatment in Personal Injury Claims (September 2000) says of brain injury case managers, "Obviously, if a specialist case manager can be obtained then the first hurdle is cleared".[76] The DoH itself agrees in its evidence that "it is recognised good practice that each patient should have a case manager".[77] In reality it will need to be more directive about "good practice" if local statutory agencies are to implement such systems.

Collaboration and joint working

62. As effective rehabilitation means a multi-disciplinary approach, planning a rehabilitation package will have to involve a variety of agencies. In the statutory sector, this means primarily health and social services, although it also includes, importantly, the Employment Service. However, social services and health seem unable to agree over their respective responsibilities in regard to rehabilitation, which is perhaps understandable since the necessary interventions will not always be medical. What is less easy to understand is how the statutory services can allow their indecision and differences to obstruct the delivery of vital services to needy people. As the wife of a head-injured man told us, "the NHS had been our biggest disability for a long time"; she went on to say "it is not a lack of money that drives the problems of rehabilitation per se, but... poor management" - the health authority in her area had been prepared to fund a more expensive but less appropriate package than the one she wanted for her husband.[78] One problem with the provision of funding by social services, is that head-injured people do not fit into their categories for classifying disabled people, since their main disability is neither physical nor classified as a mental health problem (see paragraph 53). Social services also seem to purchase care home services from agencies which place the lowest bid, often at the cost of quality.[79]

63. In fact, in many locations, the statutory sector is in no position to tackle head injury rehabilitation on its own, and the independent sector provides a large tranche of available services. The contribution of the independent sector is large in this field partly because of the significant gaps in statutory services, and partly because some victims of head injury win compensation monies with which they can buy private care packages. Services provided by the independent sector include specialist services such as behavioural units, residential units and community networks of social support such as those provided by Headway. Of the 93 responses received by 28th February to our call for evidence, 18 were from branches of Headway, and Headway was mentioned in nearly all of the other memoranda, a notable exception being that from the Department of Health. Headway and other charitable organisations clearly play a major role in plugging the gaps and providing core services where the statutory services are inadequate. Angela Hicks told us, "I can say that if it was not for Headway I would not be in a fit state to talk to you today".[80] She described her first meeting with Headway as "the beginning of tremendous support in terms of reading material, help lines, professional counselling, art therapy workshops for my children, advice with solicitors and seeking compensation, knowing what questions it was you needed to ask".[81] Despite the important role of the independent - charitable and commercial - sector, according to our written evidence, the statutory services neither collaborate with each other nor with independent agencies in the provision of rehabilitation for head-injured people. Statutory agencies even refuse to refer patients to providers in the independent sector, despite the major role of these agencies in the field. The evidence from the Department, in fact, entirely omits mention of the charitable and commercial agencies which provide so many of the services available to head-injured people, particularly in the community, a fact we find disturbing.

64. Statutory services also seem extremely reluctant to recognize the potential benefits of collaboration with the voluntary and charitable sector in the planning of services. A good example of this has been provided in evidence to us. The Neuro-rehabilitation Project at Hope Hospital sent us a very detailed copy of their recommendations for the redesign of neuro services in Greater Manchester. We also received a memorandum from several very concerned head-injured people and carers, as well as from Rehab UK, describing the imminent collapse of Rehab UK's Greater Manchester Brain Injury Vocational Rehabilitation Centre due to lack of funding support from the statutory agencies, despite its track record of success.[82] The "inter-professional, inter-agency group" which had compiled the large number of recommendations for the future of neuro-rehabilitation services in Greater Manchester did not mention the activities of this charity, nor did the membership of its group include any representation of independent agencies. Rehab UK highlights the point that

    "ironically in Manchester the need for these community based services are written into the Neurosciences Plan, but this has not been fully implemented... the threat is that a specialised and highly trained team will be dismantled only to find that in two years time when the restructuring of the Neurosciences Initiative is complete, the need for the services will be even more apparent".[83]

65. This kind of lack of communication is very wasteful of the efforts made by staff of the statutory and charitable sectors to meet the needs of head-injured people and their families.

66. According to Priory Healthcare, "there is an untested hypothesis, among some facilities, that independent providers enjoy the least favourable relationship with their host health authority".[84] Leonard Cheshire described to us how it has been used irresponsibly by health authorities which have initiated research in which the charity has invested time and money and then taken no further action.[85]

67. We recommend that the statutory services recognise the contribution in this field of the independent sector, and that they collaborate actively with them to provide the best possible service for the patient.

68. Where statutory services contract with charities to provide core services, they pay the minimum fee and do not help charities to improve and develop what they provide. Mr Curley said,

    "the problem for many local Headway groups is that although the social services department will contract with them and pay them a daily rate for providing activity and long term rehabilitation... they invariably will not or cannot provide the necessary funds for the development of new services".[86]

69. We recommend that the DoH should help charitable organisations, where they are providing core services, to develop these services further.


70. Planning of services for brain-injured people is extremely important, for two main reasons. First, brain injury is a high volume problem. Although the incidence of head injury is fairly low, life expectancy is normal and hence, over time, what seems like a low volume problem becomes a high volume one. Planning helps authorities to provide services more economically. Second, a lack of planning leads to ad hoc arrangements and delay for the patient in accessing services. For brain-injured people this delay can have significant consequences, in terms of losing the short optimum period in which they can improve the most from rehabilitation interventions, and even regressing if the patient is placed in inappropriate surroundings.[87]

71. This lack of planning also seems to prompt health authorities to avoid providing services where possible, and to delay as long as possible buying these services for individuals. The evidence submitted also provides many examples of health and local authorities' social services departments delaying provision of services by arguing between themselves about whose responsibility it is to provide rehabilitative care to head-injured people. These responsibilities need to be defined centrally to avoid such lengthy and costly disputes.

72. Health authorities have also been known to avoid buying out of area treatments which they do not themselves provide, insisting instead that a patient use the (inappropriate) rehabilitation service that is provided within the area. Mr Curley:

    "it is... an arrogance on the part of the health authorities that because they have something called the rehabilitation service, that can cater for everybody who needs rehabilitation, even though the rehabilitation service may well be geared up principally to deal with physical rather than cognitive rehabilitation".[88]

73. We recommend that responsibilities to provide different kinds of rehabilitation are defined between health and social services, and that named managers are identified within both health and social services departments. We further recommend that health and social services departments collaborate locally to map out care pathways for head-injured people with clearly allocated responsibility at each level of care. These care pathways should include agreements with services out of the catchment area if the service is not provided within the catchment area of the health authority.

74. In order to plan meaningfully, authorities need access to accurate data on the numbers of people needing services. This is another reason why health authorities must be required systematically to collect data on the incidence and prevalence of head injury and subsequent disability (see paragraph 12).

75. Planning is also made difficult by the apparent lack of knowledge about what resources and services actually exist. Many memoranda made this point, and it appears that although up to two years ago a UK-wide directory of TBI rehabilitation units was produced by a leading Scottish rehabilitation centre, the future of this invaluable resource is now in doubt due to a lack of funding.[89] We recommend that the Government subsidises a publication of all resources available to head-injured people and circulates this to health authorities.

76. One reason why authorities do not plan as well as they should is that the mechanisms for doing so are poor. Rehab UK tells us - " the criteria established under the Community Care Plan excludes people with ABI because the assessment instruments used are biased towards those with physical impairments or mental health problems, and unable to assess the impact of more complex cognitive problems".[90] We recommend that Health Improvement Plans and Community Care Plans have a section for planning services which will include the rehabilitative services needed by those with complex neurological conditions such as head injury.

77. We heard of several examples of money wasted on badly planned services. The Chairman of Headway Bristol described the Frenchay Brain Injury Unit in Bristol in fairly pejorative terms - "for all that has been provided and put in place the majority of brain-injured and their families are worse off than they were fifteen years ago".[91] It was also depressing to hear of good services which had been allowed to wither, as has been the case in Cornwall, according to Headway Cornwall -

    "the present situation in Cornwall in 2001 is that services... are patchy and inadequate... there has been a much more comprehensive service, which developed and flourished until about 1997, which has now disintegrated and run down through lack of funding and direction".[92]

None of the service developments which took place were supported by the local health authorities but were instead funded by various grants.

78. There also seems to be a lack of co-operation between statutory agencies when a wider sub-regional or regional plan is needed, for example for the provision of specialised services. It is debatable at what level strategic planning of head injury services should take place. With the advent of PCG/Ts, the worry is that these bodies will be even less well equipped than health authorities to take on planning of specialised services. Dr Andrews suggests that "consideration should be given to the appointment or a Complex Neuro-disability Co-ordinator to regional health authorities or consortia of PCTs".[93] The cost of specialist Acquired Brain Injury services will place a great strain on PCT budgets if there is even a slight increase in incidence one year - it would make more sense, therefore to give planning and budgets for these services to a higher tier of management.[94] This problem was described by Mr Curley:

    "we discovered when looking at the report of the National Specialist Commissioning Group annual report that the one subject which most regional specialist commissioning groups have chosen to look into after they have dealt with the ones they are required to examine by central Government was neurological services and that arose from a particular concern about how brain injury rehabilitation in some of these regions was going to be funded, because the word coming from primary care trusts is that this is not something that they are going to be able to budget for because the costs can be so enormous".[95]

We recommend that the Government makes explicit the level at which responsibility for planning different levels of rehabilitation for head injury should be located.


79. Perhaps one reason why health authorities do not prioritise head injury or its rehabilitation is that the Government does not either. As Lincolnshire Headway writes of the health authorities, "when approached they say it is not a priority on the Government or NHS guidelines and they have to keep in line with them".[96] Mr Pope of North West London Hospitals trust told us quite clearly that "one of the things that will undoubtedly concentrate your mind [as a Chief Executive of a trust] is you would get another priority or something that you are trying to focus on".[97]

80. On 28th February, the Secretary of State announced that the DoH would be developing a National Service Framework (NSF) for people with long term conditions, which will cover neurological disability and head and spinal injury.[98] They added "we expect it to cover rehabilitation activity".[99] It is to be hoped this will be the case and that this will make a difference to the planning of rehabilitation services in the localities. However, this NSF will only be ready for implementation in 2005. When, in oral evidence, we tried to pin the Minister down to making a commitment as to whether or not the NSF would definitely include brain injury rehabilitation, it was impossible to elicit anything firmer than "that would be the intention".[100]


81. Services vary in quality across the country to a large degree, depending on facilities and resources. Services also vary according to whether or not the head-injured person has a claim to compensation monies. If this is the case, they will often purchase private facilities and bypass NHS ones, and may, as a result, have a far superior level of rehabilitation to that of an individual without a claim to compensation. They are also more likely to obtain the services of a Case Manager, with all the advantages that that entails.[101]

82. Most rehabilitation units operate age restrictions above the age of 65, even though there is no reason to suggest older people cannot benefit from rehabilitation. According to Headway, "anecdotally there is strong reason to suppose rehabilitation is not made as accessible to older head injury survivors, particularly those over 65 years, as it is to younger survivors".[102] As a clinical psychologist and manager of Headway Southampton wrote, "when brain-injured people reach the age of 65, even though their problems are related to brain injury not ageing, social services remove them from their day provision and place them in older adults day centres, which are not appropriate" but cost much less to run.[103]

Government Action

83. 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".[104] Only very recently has any action come from the centre to attempt realise these principles, as regards head-injured people. On 16 November 2000, the Government announced that NICE had been commissioned to produce guidelines on the "handling" of brain-injured patients. The guidelines are expected to take between 12 and 18 months to produce. Headway said they "would attach enormous importance" to these guidelines, with reference to the difference guidelines have made to stroke services.[105] However, Yvette Cooper made quite clear to us that, for various reasons, the guidelines would not include long term rehabilitation. Asked whether the guidelines would include rehabilitation, she said "the answer is no if you are talking about long term rehabilitation".[106] She emphasised that the guidelines would be concerned exclusively with acute management of head injury, and so might include very early rehabilitation interventions within the acute setting. The reasons why long term rehabilitation was not to come within the remit of the guidelines, were that "the evidence base is much stronger for the immediate clinical management of head injury than for longer term rehabilitation. Secondly, because rehabilitation must be tailored to the needs of each individual, it just may not lend itself to NICE clinical guidelines in the same way".[107]

84. Yvette Cooper was clear in oral evidence that, while the NICE guidelines would not include long term rehabilitation, the NSF was the place to look for this work to be done. She said, "Certainly the intention has been for the NICE guidelines to set up those clinical referral patterns, but for the National Service Framework to pick up on the detailed work around the rehabilitation".[108] However, it was impossible to get an unequivocal assurance from the Minister that the NSF would definitely include rehabilitation. While we can appreciate that the scoping of the NSF for long term conditions is yet in its early stages, we would ask Ministers to clarify whether or not it will include rehabilitation for head-injured people. As the NICE guidelines do not appear to be relevant to long term rehabilitation, some assurance is necessary that consideration of this area will enter into some policy work as a matter of urgency.

85. We were also assured that although the NSF will not be ready for implementation until 2005, this does not mean that nothing will be happening before then - "It may be that some of the work that is commissioned as part of the NSF may lead to more rapid progress" and "It will not simply be we tell people at the end of the process in four years' time or five years' time what happens, we will need to draw people into the process of development... as we go along. That does provide us with the opportunity to raise the profile of rehabilitation across the board".[109] This seems to us a rather weak assurance, especially since it is not clear whether or not rehabilitation will figure within the NSF. We recommend that the Government spells out clearly what steps it will take to improve the situation in the provision of rehabilitation services for head-injured people, and that it instigates plans for action which will come into place long before 2005.

86. The Minister and officials also assured us that useful work on rehabilitation was being done through the new concept of intermediate care. Dr Sheila Adam, the Deputy Chief Medical Officer, told us "as you will know rehabilitation is a major component of that, with a view to helping people move through hospital and possibly preventing the need for long term institutional care - although it is not linked specifically to head injury we have been very clear that intermediate care, although primarily focused on older people, will be there for anyone who can benefit from it".[110] When asked what guidelines were currently given to health authorities on rehabilitation, Dr Adam went on to say "I think probably the best answer is the detailed guidance which has just gone out to intermediate care, which includes a section on rehabilitation. That is certainly the most recent statement we have made".[111] We would be very perturbed to imagine that Dr Adam was implying that the guidance on intermediate care constituted the best guidance given to health authorities about rehabilitation. The health service/local authority circular of 19th January 2001 on Intermediate Care makes quite clear that intermediate care is predominantly aimed at older people - it begins "Intermediate care is a core element of the Government's programme for improving services for older people".[112] The guidance does mention other groups: "Service planning and investment should, however, take into account the needs of all potential service users, especially younger disabled people or chronically ill patients and their carers", however the emphasis throughout is on older people.[113] Head injury occurs typically to young males, at a time of life in which they are likely to be establishing themselves in careers and in starting a family. It is clear that they would derive little benefit from care and rehabilitation that is so obviously skewed to the needs of elderly people.

87. Moreover, the guidance makes clear that intermediate care interventions are short term. In its definition of intermediate care, the guidance states that "intermediate care should be regarded as describing services that meet all the following criteria" - which includes the criterion that services must be "time-limited, normally no longer than six weeks and frequently as little as 1-2 weeks or less".[114] We have already established that rehabilitation for head-injured people is a long term commitment, and may be for life. We believe that the Government cannot rely on intermediate care, as so defined, to provide comprehensive rehabilitation services to head-injured people. Given the problems surrounding the NICE guidelines, the NSF on long term conditions, and intermediate care, we recommend that the Government with urgency formulates policy which does cater for the long term rehabilitation of head-injured people.

8   The Times, 15.3.01. Back

9   Mental Health Services: Heading for Better Care, Health Advisory Services, 1996, p.15. Back

10   Rehabilitation After Traumatic Brain Injury: A Working Party Report of the British Society of Rehabilitation Medicine, British Society of Rehabilitation Medicine, 1998, p.8. Back

11   Mental Health Services: Heading for Better Care, p.189. Back

12   "ICD-10 codes detect only a proportion of all head injury admissions", Deb S, 1999, in Brain Injury, 13 (5): 369-373, cited in Ev., p.12. Back

13   Official Report, 5.2.01, 393w. Back

14   Q95. Back

15   Rehabilitation After Traumatic Brain Injury, pp.9-10. Back

16   "Disability in young people and adults one year after head injury: prospective cohort study" Thornhill et al, 2000 in BMJ 320: 1631-5, cited in Ev., p.3. Back

17   Appendix 25. Back

18   Q14. Back

19   Q23. Back

20   Q11. Back

21   Informal carers have the right to an assessment of their needs under the Carers (Recognition and Services) Act 1995. Back

22   Report of the Working Party on the Management of Patients with Head Injuries, Royal College of Surgeons, 1999, p.3. Back

23   Q4. Back

24   Q7. Back

25   Appendix 24. Back

26   Appendix 9. Back

27   Ev., p.57. Back

28   Ev., p.6. Back

29   Q13. Back

30   Q2. Back

31   Ev., p.7. Back

32   Appendix 7. Back

33   Appendix 16. Back

34   Appendix 14. Back

35   Q38. Back

36   Q39. Back

37   "The effectiveness of rehabilitation: a critical evaluation of the evidence", ed. L. Turner-Stokes, 1999, Clinical Rehabilitation, Vol 13, Supplement 1, p.19. Back

38   Q71. Back

39   Report of the National Traumatic Brain Injury Study, Centre for Health Services Studies, University of Warwick, 1998. Back

40   Ibid., Summary of Report, p.4. Back

41   Ev., p.57. Back

42   Q70-71. Back

43   Q71. Back

44   Q110. Back

45   Q111-112. Back

46   Safe Neurosurgery 2000: a report from the Society of British Neurological Surgeons, 1999. Back

47   Q71. Back

48   Third Report from the Welsh Affairs Committee, Session 1994-95, Severe Head Injuries: Rehabilitation, HC 103-I. Back

49   Ev., p.34. Back

50   H87 (not printed). Back

51   Q42. Back

52   Appendix 27. Back

53   Appendix 20. Back

54   Q39. Back

55   Appendix 28. Back

56   Q47. Back

57   Appendix 5. Back

58   Q46. Back

59   Ev., p.58. Back

60   Appendix 6. Back

61   Appendix 4. Back

62   Q44. Back

63   Appendix 9. Back

64   Q107. Back

65   Q17. Back

66   Q20. Back

67   A Hidden Disability: Report of the SSI Traumatic Brain Injury Rehabilitation Project, SSI and DoH, 1995, cited in Appendix 17. Back

68   Appendix 17. Back

69   Appendix 11. Back

70   Q27. Back

71   Appendix 12. Back

72   Q27. Back

73   Appendix 19. Back

74   Appendix 1. Back

75   For example, Appendix 14. Back

76   Cited in H65 (not printed). Back

77   Ev., p.57. Back

78   H33 (not printed). Back

79   Appendix 7. Back

80   Q11. Back

81   Q16. Back

82   Eg. Appendix 8; H41 (not printed). Back

83   Appendix 28. Back

84   Appendix 19. Back

85   Appendix 7. Back

86   Q39. Back

87   Ev., p.6. Back

88   Q37. Back

89   Ev., p.9. Back

90   Appendix 28. Back

91   Appendix 11. Back

92   Appendix 15. Back

93   Ev., p.40. Back

94   Appendix 29. Back

95   Q33. Back

96   Appendix 10. Back

97   Q78. Back

98   DoH Press Notice (16.11.00). Back

99   Ev., p.58. Back

100   Q96. Back

101   Appendix 18. Back

102   Ev., p.5. Back

103   Appendix 26. Back

104   Cited in Appendix 23. Back

105   Q50. Back

106   Q98. Back

107   IbidBack

108   IbidBack

109   Q100, Q102. Back

110   Q101. Back

111   Q103. Back

112   Intermediate Care, HSC 2001/01: LAC (2001)1, 16.1.01, p.5. Back

113   IbidBack

114   Ibid., p.6. Back

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