House of Commons - Health - Minutes of Evidence

Select Committee on Health Minutes of Evidence

MEMORANDUM BY HEADWAY (H29)

CONTENTS

Executive Summary

Recommendations

1. Introduction

2. Headway—the brain injury association

3. Epidemiology

4. Methodology

5. Analysis of enquirers

6. Analysis of enquiries by time interval

7. Themes of rehabilitation

8. Conclusion

APPENDICES

1 History of Headway—the brain injury association

2 Epidemiology of head injury

3 Headway Information Enquiry Service statistics 1997-2000

EXECUTIVE SUMMARY

Although there is currently a lack of sound up-to-date epidemiological data on the UK wide incidence of head injuries, (or traumatic brain injury, as it is also termed), it can be estimated from 1991 figures that approximately 186,000 people each year are admitted to hospital with a diagnosis of head injury.

However, the experience of Headway is that these figures may underestimate the true extent of the incidence of head injury, which affects not only the individual head injury survivor, but also their family, friends and work colleagues.

This submission is based on an analysis of a representative sample of enquiries on issues related to rehabilitation, received by the information enquiry service at Headway central office.

Headway believes this evidence indicates serious deficiencies in the provision of rehabilitation to head injury survivors, and that this is causing unnecessary distress and hardship to head injury survivors, their families and carers.

From this analysis of the experiences of people directly affected by head injuries, Headway has drawn up a series of recommendations, which it hopes the Government will adopt.

RECOMMENDATIONS

Arising from this submission, Headway recommends that:

— the Department of Health should immediately implement the effective gathering of epidemiological data on the incidence of traumatic brain injury in the UK;

— a system should be implementation to make better information available to non-expert health professionals on the long term consequences of traumatic brain injury, and the services available to support their clients with head injuries, whether in the acute, post-acute, rehabilitation or community setting;

— head injury survivors and carers should have better access to up-to-date, accurate and timely information at the point in time at which it is relevant;

— head injury survivors and their carers should have access to the full range of appropriate rehabilitation services, which should not be restricted by reason of age;

— in keeping with the commitment of the New NHS to patient-centred services, there should be effective monitoring of head injury survivors in the community to ensure continuity of and access to appropriate care and rehabilitation;

— access to appropriate and effective rehabilitation should be facilitated for head injury survivors as and when necessary for the well being of themselves and their carers, for the rest of their lives;

— in the interests of supporting head injury survivors in employment, a commitment should be made to ensure GPs and employers are correctly informed on the effects of mild head injury and how to effectively support employees with head injuries in the workplace.

1. INTRODUCTION

1.1 This document forms part of the submission to the Health Select Committee by Headway—the brain injury association. It should be read in conjunction with the accompanying appendices; the written submissions of Headway's local groups and branches; and the oral evidence of Kevin Curley, Chief Executive of Headway.

1.2 Headway's objective is to highlight the rehabilitation needs of head injury survivors. This is achieved in this document by reference to primary data extracted from routine monitoring information collected from enquirers to Headway's national information enquiry service during the period April to June 2000.

1.3 This data will first be contextualised by reference to:

— the history of Headway—the brain injury association, its membership and objectives as a national charity;

— the epidemiology of head injury;

— background information on Headway's national information enquiry service.

1.4 A brief explanation of the methodology used will be followed by the presentation and commentary on the data.

1.5 Appendices are included for the information of Committee members who might wish to pursue in greater detail issues raised the main body of the text.

1.6 The term "head injury" as favoured by the Health Select Committee in the title of this Inquiry is synonymous with the term "traumatic brain injury", a designation which is the preferred term amongst clinicians and those working in the neurosciences. It will sometimes be necessary for purposes of clarification (such as in reference to Headway—the brain injury association) to use the term "traumatic brain injury" in preference to "head injury".

1.7 Reference is made in this document to head injury of varying severity. The Glasgow Coma Scale is one of the diagnostic tools used by clinicians to measure the severity of head injury. The person with head injuries is assigned a numerical score to measure degrees of unconsciousness. The minimum score, indicating a degree of severe injury is 3, and the maximum score, indicating a lesser injury is 15. Mild head injury on this scale, for example, is usually scored at 13-15.

1.8 All identities in the case studies appearing throughout this document have been changed to preserve the anonymity of the individuals concerned.

1.9 Case study material illustrating this document, and which is drawn directly from the enquiry monitoring forms making up the data sample, is presented in italics for ease of reference.

2. HEADWAY—THE BRAIN INJURY ASSOCIATION

2.1 Headway—the brain injury association is a major national neurological charity. It is the only national charity whose mission is to offer information, advice, support and services to traumatic brain injury survivors, their families and carers. It also supports the concerned professionals from a range of disciplines, who have clients or patients with a head injury.

2.2 Headway was founded in 1979 by a group of carers, the partners and parents of head injury survivors, for the purposes of mutual support and encouragement. At this time, there was a lesser understanding of the long-term difficulties of head injuries, and nothing in the way of information provision or practical support for brain injury survivors either in the post-acute hospital setting, or in the community.

2.3 Twenty-one years later, Headway has a central office in Nottingham and over 112 local groups and branches throughout the UK, 57 of which are providing day care and therapeutic activities through Headway House centres. Headway is a member-led organisation which elects a Board of Trustees who determine its guiding strategy and policies.

2.4 The national information enquiry service is provided from the organisation's central office in Nottingham. Due to increased demand, this service will be extended later in 2001.

2.5 Day care provision in Headway Houses may be supported by local statutory services through service level agreements. However, the national charity is 98 per cent dependent on voluntary donations for its funding.

2.6 For fuller background information on Headway, please refer to Appendix 1.

2.7 The Headway national information enquiry service operates during office hours, Monday to Friday, 9.00am to 5.00pm. The running of this service is the responsibility of the Information Services Team at Headway central office in Nottingham.

2.8 Appendix 3 gives a comparison of monthly totals of enquiries received by the service during the period 1997-2000. From this it may be seen that the number of enquiries continues to rise year on year. In the year 2000, the rise represents a 28 per cent increase on the previous year's figures.

2.9 These enquiries are almost entirely from individuals contacting Headway for the first time. Therefore they are particularly valuable as indicators of levels of awareness about head injury existing in the general public, and highlight the level of access to information and services which is available to survivors and their families in the acute, post-acute phases, and in the community.

2.10 Information is taken from enquirers primarily for the purpose of answering the enquiry. It also provides monitoring data of a detailed nature, which is anonymous.

3. EPIDEMIOLOGY

3.1 Before examining the unique data obtained from Headway sources and analysed in this document, it is essential to consider the epidemiology of head injury.

3.2 Statistics on the UK-wide incidence of head injury are dated, and therefore potentially inaccurate and open to misinterpretation. For example, a recent Written Answer to a Parliamentary Question on support given to survivors of acquired brain injury, erroneously quoted statistics which referred only to traumatic brain injury (head injury)[1]. The designation "acquired brain injury" includes not only traumatic brain injury (head injury), but also other brain injuries and progressive neurological conditions, such as stroke.

3.3 Neither are the statistics of recent origin. Current statistics on the incidence of head injury, are, in fact, based on a 1991 study by Tom McMillan and Richard Greenwood, respected experts in the neurosciences[2]. It is these figures which are the origin of the statistics quoted in the 1999 Royal College of Surgeons' report into the management of head injuries[3].

3.4 These figures suggest that out of the one million people who present themselves at hospitals this year, the majority (84 per cent) will have sustained a mild head injury, 11 per cent will have sustained a moderate head injury, and five per cent of admitted cases will be severe (Appendix 2).

3.5 Assuming a UK population of 60 million for illustrative purposes, statistics suggest that between 162,000-186,000 people are admitted to hospital each year with some diagnosis of head injury.

3.6 Most studies carried out since 1991 have used a local, not global sample. The most recent of these, that of Thornhill et al. in Glasgow[4], not only estimate a higher incidence of head injury in the population—nearly 4.5 times higher, but also reflected a higher level of unrecognised problems on discharge than had previously been supposed.

3.7 The reason for this discrepancy may lie in the way statistics on head injury have been obtained. Firstly, statistical data has been based solely on hospital admission. It is well known that many people experiencing a mild head injury will not visit either an A & E department, or a GP's surgery.

3.8 Hospital Episode Statistics for head injury are based on the relevant 10 codes of the International Classification of Diseases. However, research in Wales suggests that less than 50 per cent of all head injury admissions can be detected by reliance on this method[5].

3.9 A full discussion of epidemiology can be found in Appendix 2.

3.10 Should reliable data be collected, Headway believes it will undoubtedly indicate far higher numbers of people with head injury in the population than is generally assumed. Headway would therefore argue for appropriate resources to be made available to support people with head injuries and their carers, and the professionals who work with them.

3.11 Headway believes it is imperative that the Department of Health takes the lead in establishing an effective and systematic collection of statistical data on the incidence of head injury as soon as possible.

4. METHODOLOGY

4.1 The data interrogated for the purpose of this submission was extracted from the details of each enquiry to Headway's information enquiry service, as recorded on the monitoring sheet currently used by staff.

4.2 As the timescale for the presentation of written submissions did not permit the analysis of large data sets, the quarterly return for the months April-June 2000 was selected for analysis. It was considered that this formed a representative sample of enquiries received during the year.

4.3 Given the terms of reference of the Health Select Committee Inquiry, and its focus on the rehabilitation of "head injured adults", it was agreed that enquiries selected for analysis should meet the following criteria:

— The person with head injuries (the subject of the enquiry), should be an adult, that is, over 16 years of age;

— Other acquired brain injury (such as subarachnoid haemorrhage), would be included in the analysis if connected to an incident of traumatic brain injury;

— The enquiry itself should focus on rehabilitation;

— Rehabilitation should be understood as including both formal and informal services and support;

— Analysis should express the rehabilitation enquiry in terms of an unmet need, absence of lack of rehabilitation.

4.4 During the selected months, April-June 2000, a total of 1,285 enquiries was received by the information enquiry service. From these, 231 enquiries met the criteria for inclusion in the analysis. These will henceforth be referred to as "the sample".

4.5 The sample was analysed according to the following criteria:

— Enquirer type;

— Length of time since incident of head injury;

— Enquiry focus on rehabilitation.

4.6 The sample was then interrogated to define the common themes present. This interrogation identified six major issues connected to rehabilitation:

— A refusal of a referral to a clinician or for rehabilitation;

— The provision of an inappropriate referral, rehabilitation, or treatment;

— A need for community support;

— A direct request for a rehabilitation unit(s);

— A need for a referral to an appropriate neuro-specialist;

— A need for vocational or educational rehabilitation.

4.7 The total number of rehabilitation themes present in the sample is greater than the number of enquiries, since it was not uncommon for a single enquiry to be connected with more than one theme.

4.8 In connection with the rehabilitation theme, it was noted what associated problem had prompted the enquiry. These were divided into four areas:

— Physical;

— Cognitive;

— Emotional;

— Behavioural.

4.9 Again, it must be noted that enquirers generally mentioned more than one associated problem connected with a single enquiry.

5. ANALYSIS OF ENQUIRERS

5.1 Enquirers to the Headway service were generally prepared to self-identify (as head injury survivors, carers etc). A total of 30 per cent of enquiries were received from people with head injuries themselves. Most head injury survivors were in the mid 20s to late 30s age group, which corresponds to the figures referred to in the epidemiology. They were therefore an economically active group, some approaching the height of their earning power and responsibilities.

Table 1

ENQUIRER BY TYPE AND SEX

		Number of		Sex of Caller		Sex of Person with TBI1
Enquirer Type	Enquiries	F	M	NK2	F	M	NA3/NK
Person with TBI	69 (30%)	41	27	1	41	27	1
Spouse/Partner	28 (12%)	21	7	1	8	17	3
Parent	32 (14%)	28	3	-	4	27	1
Other Relative/Friend	40 (17%)	28	11	1	13	21	6
Professional	52 (23%)	38	14	-	2	20	30
Other/Not Known	10 (4%)	7	2	1	-	1	9
Totals:	231 (100%)	163	64	4	68	113	50

1 TBI = Traumatic brain injury.

2 NK = Not known.

3 NA = Not applicable

5.2 A further 43 per cent were enquiries received from spouses, partners, parents, relatives and friends.

5.3 As a result, it is clear that a very high percentage of enquirers, 73 per cent, were people directly affected by head injury. This would indicate that enquirers found difficulty in obtaining necessary information elsewhere.

5.4 The relationship of the caller to the person with the head injury was fairly evenly divided between spouses/partners, parents and other relatives or friends. Adult siblings had high representation in the last category, particularly when the injury was severe, or the head injury survivor remained in an acute or post-acute hospital setting.

5.5 Because of the age of the head injury survivors, the parents identified in the sample were at least in their late 40s and 50s, and potentially taking on caring roles for a young adult when approacing retirement. This has implications for the long-term support of carers, and that of the adult with head injuries, who may need regular, intensive supervision or support to enjoy a modicum of independence.

5.6 Although there is no intention to draw definitive conclusions about the significance of the gender of enquirers, it can be noted that most enquirers were women. This is true both of head injury survivors, and those making enquiries on their behalf.

5.7 Generally, enquiry information does not register the severity of the head injury, since the collection of detailed medical information is outside the scope of the information enquiry service. However, in 2000, attempts were made to identify instances of mild head injury in enquiries, which according to recently published research, is responsible for 80 per cent of head injuries in Europe[6]. It can therefore be estimated that in this sample, 11 per cent of enquiries were made in connection with a mild head injury.

5.8 Similarly, although the age of enquirers is noted if provided, it is not sought directly unless the subject of the enquiry is a child (under 16). However, the age of older (over 60) subjects is noted as far as possible, since 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. In this sample, 5 per cent of enquiries involved a person with head injuries who was over 60.

5.9 Nearly a quarter of the sample were professionals making enquiries on behalf of particular clients, or for the benefit of their own service. The majority of these professional enquirers were from the statutory services, either health or social services.

5.10 These enquiries were made because sources of information or services could not be identified in the enquirer's own statutory agency. The following is a typical request for information.

Disability Services Advisor, North-Western Community Healthcare Trust, has 23-year-old client with serious head injuries. The community psychiatric nurse is out of his depth, and the client needs more in-depth counselling. Can you help?

6. ANALYSIS OF ENQUIRIES BY TIME INTERVAL

6.1 Not all enquirers gave details on the timescale of their head injuries. However, 16 per cent of enquirers contacted Headway within six months of the incidence of the head injury, and a further 10 per cent of enquiries were made between six months and two years of the injury.

Table 2

Enquiries By Length of Time Since Traumatic Brain Injury (TBI)

Time since TBI	Number of enquiries
up to 6 months	37 (16%)
7-12 months	10 (4%)
13 months-2 years	13 (6%)
25 months-5 years	22 (10%)
61 months-15 years	18 (8%)
>15 years	10 (4%)
Not Known	121 (52%)
Total:	231 (100%)

6.2 Two years is considered a significant marker in post-head injury recovery. Although the length of this time period is debated amongst professionals and researchers in the neurosciences, there is agreement that a point is eventually reached at which the rate of improvement in rehabilitation slows down. For the purposes of analysis, we have chosen two years to represent this point.

6.3 It is therefore disturbing to realise that a high number in the sample were contacting Headway for the first time at a point post injury far in advance of two years. This may have a detrimental effect on their prospects of recovery.

6.4 A total of 18 per cent of enquiries indicated that the incident causing the head injury occurred between two and 15 years prior to the enquiry, and in a further 4 per cent, this time interval was more than 15 years.

6.5 In enquiries in which the time interval was over four to five years, it was noticed that the person with head injuries was less likely to have received rehabilitation.

Miss X had a head injury 11 years ago following a fall while horse riding. Diagnosed with two skull fractures. In hospital for approximately 10 days. No rehabilitation. At time of enquiry suffering from depression (quite severe at times), fatigue, balance problems, and distressing short-term memory problems.

6.6 Injuries which were less severe, might still have severe long-term consequences. For example, a mild head injury, if untreated or inappropriately treated, and whether occurring recently or in the past, could cause the enquirer to identify symptoms and long-term effects similar to those experienced by a survivor of more severe injuries. This supports the findings of the recent Thornhill study referred to in the Epidemiology section.

Mrs W enquiring on behalf of daughter now aged 22. Head injury sustained five years ago through a fall on ice. Daughter experienced concussion. Now not the girl she once was. Behaviour has changed. Intolerance of noise, headaches. Concentration skills not as they used to be. No evidence of rehabilitation having been offered.

6.7 At present, rehabilitation, if provided by the NHS, is most usually provided in the form of a finite programme of care. That is, an assessment is made following the post-acute stage, and a rehabilitation programme based on the needs of the individual at that point in time is implemented. The time period may vary from weeks to months, and sometimes longer. However, once this is over, the individual is returned to the community and to whatever support is present. They then cease to be the responsibility of any secondary care or rehabilitation team.

6.8 However, this does not mean that the person with head injuries will never again require professional intervention. Quite the contrary, the case studies included in this document give some indication of how over time, one head injury survivor may require several interventions during certain periods. This is to counter specific difficulties: emotional problems, vocational/employment difficulties, educational difficulties, behavioural problems—all of these and more may cause severe distress to the head injury survivor and their family.

Mr S enquiring on behalf of his daughter. She received her head injury in a road traffic accident in 1976. Lately has been having trouble keeping employment. Has had a series of jobs, but walks out after a few weeks. Also has a sight impairment as a result of the accident.

6.9 If an intervention is not forthcoming, the problems of the person with head injuries can cause a domino effect, creating a pattern of destruction in the crucial minutiae of everyday life. This in turn destabilises the personal situation for that individual and compromises their ability to live independently.

Miss T received a head injury in a car accident about a year ago. Currently involved in litigation. Was a "high-flyer" in a City accounting firm up until the time of the accident. In a mess with her finances. Can't deal with paperwork for day-to-day matters, let alone with the litigation material. Desperately needs help. Housing problems. Had a possession order served. Had local advice. Always tired. No one's ever sympathetic. Problems with benefits. Can't understand the system. Terrible organisation problems—finds difficulty in talking and explaining to people (officials). Can someone come and help her, please?

6.10 The aim of rehabilitation is to re-establish the independence of the individual in society. It should be noted that creating a seamless service for the many individuals like Miss T and their families is not simply about formal programmes of care. It is also about ensuring that agencies and organisations likely to deal with head injury survivors are sufficiently informed about their likely difficulties.

7. THEMES OF REHABILITATION

7.1 Of the themes which emerged around rehabilitation needs, the most common was that of community support. The level of detail about the individual's associated problems indicates that the search for practical help was triggered by the problems, rather than anticipating them.

Mr B, sustained head injuries in a road traffic accident 10 months previously. In hospital for seven weeks, back in the community since then. No apparent rehabilitation. Can't drive, and can't work because of this. Slower thought processes, and reduced visual perception. Looking for local support group.

Mr W of a local disability advice line has a client whose partner sustained a head injury at work 18 months ago. Apparently no rehabilitation. Psychological changes affecting behaviour. Individual no self-awareness of changes. Refusing help and benefits advice.

Referral from a solicitor for Miss H, a 20 year old head injury survivor. Sustained a head injury five years ago. Memory problems. Now pregnant, and needs advice on aids etc to help her look after her baby successfully.

7.2 However, as can be seen from these examples, community support is frequently only part of the equation. All of these head injury survivors displayed a need for a multi-disciplinary approach to their support. Their problems were complex, and being experienced not in a vacuum, but within a specific social situation in which others close to them played an integral part.

7.3 Quite often, returning to the community means returning home to family carers without any statutory support and help.

7.4 The role of carers today receives more recognition than in previous years. In the case of head injury survivors, carers are often placed in a uniquely difficult situation. The immense psychological, emotional and cognitive changes may alter the personality of the individual with head injuries to such an extent, that they may have become, to all intents and purposes, a different person. The situation is often compounded because to outsiders, the head injury survivor may have no observable disabilities. This may lead to the problems of the survivor and carer being belittled, misunderstood and dismissed.

Table 3

ENQUIRIES BY REHABILITATION NEEDS AND ASSOCIATED PROBLEMS

			Associated Problem
Reason(s) for Enquiry	Total	Physical	Cognitive	Emotional	Behavioural
Has Been Refused a Referral or Rehabilitation	4 (2%)	1	1	-	1
Has Been Given Inappropriate Referral/ Rehabilitation/Treatment	23 (10%)	9	7	9	1
Needs Community-based Support	74 (32%)	15	46	40	24
Looking for a Rehabilitation Unit	69 (30%)	15	18	10	10
Needs Professional Referral	64 (28%)	22	28	32	10
Needs Vocational/Educational Rehabilitation	22 (10%)	5	12	3	2
	Total:	67	112	94	48

Total number of enquiries = 231 (see Table 1)

7.5 Needless to say, on the evidence of this sample, there were little or no services to support either head injury survivors or carers in the community.

7.6 Many enquirers in this sample were carers labouring under extreme pressures. In these situations, behind the shorthand of the monitoring form is hidden a long and distressing phone call to one of the information enquiry service's sympathetic team, and a situation needing to be addressed.

Mrs P calls.

Husband has completely lost his memory. Talks about suicide.

Mrs S calls.

Husband had head injury four years ago. Gets very emotional, very angry. All the children have left home because of it. Wants to find somewhere for him to live. Even respite care would help. Has no money to pay for anything.

Mrs F calls.

Marriage breakdown after husband's head injury. Now divorced. Psychological effects very severe—emotional problems. Has eight-year-old son. Concerned about child being with father. Will he be safe?

7.7 Some circumstances also highlighted difficulties in the environment, as well as a lack of community support. For example, head injury survivors and carers in rural settings potentially face double isolation, firstly from the effect of the injury itself, secondly from being distanced from potential help by the effect of the injury, compounded by the poor access offered by the environment.

Mrs H. Had sustained a severe head injury, possibly some time ago.

Lives in rural Staffordshire. Very upset. Very isolated—can't get to local group. Main problems cognitive and psychological—language problems and memory problems. Mood swings—she speaks of them as "very evil".

Mrs W. Head injury in car accident several years ago.

Lives in rural North-East. Isolated from support. Has real difficulty in trying to develop social activities, owing to inability to tolerate fluorescent lighting, noise and crowds. Language problems—cannot read (was lecturer). Experiences physical pain from injuries sustained. Becomes depressed and emotional.

7.8 The result of many enquiries in this sample was to be advised by information staff to seek a referral to a professional in the neurosciences. This was usually either a neurologist or neuropsychologist.

7.9 In many of these enquiries, this was in conjunction with a previous inappropriate referral, or treatment.

Mrs B called on behalf of her 65-year-old husband.

Fell one year ago—40ft. Diagnosed with mild head injury. CT scan showed small haemorrhage. Only referred to psychologist (not neuropsychologist). Being seen in two months, she thinks he will be discharged. Husband has short-term memory loss, anger and bad headaches, especially on right hand side.

7.10 It is not possible from this sample to say in general what influenced the treatment or referral choices which seemed to be inappropriate. In specific instances this appeared to be linked to a lack of awareness of the issues involved among non-expert health professionals, as highlighted by a recent UK study. [7]

Mr S, former police officer, sustained a head injury one year ago in cycle accident.

Tinnitus, sensitivity to noise reported. Distressed by concentration problems. One side of face numb, nervous tic. Also fatigue.

When accident happened, sent straight home. No hospitalisation or referral to neurospecialists.

Ms C rang on behalf of father who sustained mild head injury after a fall from a ladder two weeks ago.

Unconscious for five minutes. Discharged with a diagnosis of mild head injury. Having double vision and other problems. Advised to seek a referral to a neurologist.

7.11 Many of the professionals in the study were aware that they needed to identify services for their clients, but were unable to obtain that information from their own agency. This was particularly noticeable in the number of requests received for details of rehabilitation units.

OT enquiring on behalf of client with traumatic brain injury. Has been transferred back to the referring general hospital from the acute neurological ward. Has perceptual and cognitive problems. She needs to find a placement for him. The brain injury unit at the hospital is full, and cannot take him.

7.12 The above request is typical of others received. These non-expert professionals were unaware of the existence of a UK-wide directory of traumatic brain injury rehabilitation units produced up until two years ago by a leading Scottish rehabilitation centre. The future of this valuable resource is now in doubt through a lack of funding.

7.13 For some enquirers the delay in receiving an appropriate assessment caused unnecessary difficulties and distress. The delay may have originated in an inappropriate referral, or because of a lack of continuity of care between one unit or hospital and another.

Mrs X enquiring on behalf of her husband, who had a car accident. Sent to see a clinical psychologist. Told to see a neuropsychologist. Five months waiting time.

Mr M received mild head injury last January. Didn't receive a neurological assessment until November.

7.14 Of the four enquiries where rehabilitation was refused, three were apparently concerned with the reluctance of the Health Authority involved to fund rehabilitation. One particular case was resolved after a period of more than 12 months, and a robust and determined struggle by the head injury survivor's parents not to accept less than the rehabilitation which assessment had identified as being appropriate and necessary to the individual's progress.

7.15 When such difficulties occur, valuable time is lost for the survivor to make progress. What is equally destructive, is the effect on survivor and family of a prolonged stay on a general surgical or other hospital ward where the head injury survivor's problems, especially agitation and behavioural effects are not understood by staff. Although it so happened that none of the sample enquiries referred to this type of incident in particular, it remains a common and distressing occurrence.

7.16 The majority of rehabilitation units operate an age criterion, accepting patients between the ages of 16-60 or 16-65. While this reflects the younger age group of the majority of head injury survivors, such criteria can serve to discriminate against active older people whose need for rehabilitation is no different from their younger counterparts.

Ms H, daughter of head injury survivor called. Father sustained head injury six weeks ago. Aged 62. Been quite aggressive. Lack of rehabilitation for him.

Brother called on behalf of younger brother, aged 78. Fell in shower and sustained head injury. Found unconscious—brain haemorrhage—successful operation. On mend in hospital. Now in residential care and not flourishing. No rehabilitation suggested.

7.17 Research suggests there is no reason why older people with head injuries should not make progress during rehabilitation. Although their recovery may not be to the same extent as younger survivors, they can still make considerable progress. Anecdotally, Headway has heard from past enquirers who have substantiated the positive effect rehabilitation can achieve with older people[8].

7.18 An issue for people of working age is that of returning to their previous employment, or to some kind of economic self-sufficiency. The lack of support was particularly noticeable in enquiries relating to mild head injury. To some extent it stemmed from a lack of awareness in the individual with the head injury themselves, as well as their employer, on the nature of head injury and its effects.

Mrs W enquiring on behalf of daughter, aged 24. Sustained mild head injury four to five weeks ago. Post concussion syndrome. Returning to work part-time. Fatigued—lost confidence.

Mrs P calling on behalf of husband. Has been to see clinical psychologist. Has estimated IQ reduced after head injury. Only 10 per cent of memory. Having problems with new learning. Is engineer by profession. Afraid he might kill someone by making a mistake.

7.19 Although none of the enquirers in this sample spoke of losing their employment against their wishes, some were simply not able to return to work, and could not foresee any alternative to living on benefits. The better the insight into the cognitive changes which were affecting them, the more demoralising the recognition of the skills which had been lost. However, some enquirers showed how it was possible for an employee and employer alike to deal with problems which arose.

Ms B sent the following email. I had my accident in 1997, and after discharge from the specialist units and other hospitals, I had care from the Neuro[sic] for talking/memory. I came back to work part time in February two years ago, and full time from March last year.

I had not been aware of aggressive/argumentative behaviour . . . this week I had a good meeting with my manager—I was told I can be short tempered at work—which I myself don't notice. I am concerned that I can act like this and don't know how to handle this. Is there information on where I could go to get help/advice on how to deal and correct this?

7.20 There is very little in the way of vocational rehabilitation available to head injury survivors, much of whose problems relate to cognitive and behavioural difficulties rather than physical symptoms. However, if appropriate programmes were offered, it could reduce the number of individuals and families on benefits, and allow people with brain injuries to both use the skills they still possess, develop new skills, and so remain economically independent.

8. CONCLUSION

8.1 This submission demonstrates Headway's concern that a number of factors are preventing the provision of effective rehabilitation to people with head injuries.

8.2 Headway feels that if the Government adopted the recommendations of this submission, many of the concerns and problems identified by those directly affected by head injuries could successfully be addressed.

8.3 The new NHS plan, which Headway welcomes, clearly puts patients and carers at the heart of health and social care. The adoption of Headway's recommendations would make this goal a reality for head injury survivors, their families and carers.

APPENDIX 1

HEADWAY—THE BRAIN ASSOCIATION: HISTORICAL NOTE

In mid-1979, an advertisement appeared in the Daily Telegraph asking for holiday accommodation for the brain-injured son of Sir Neville Butterworth. Dinah Minton, who had an injured son herself, answered the advertisement. Together with Barry Minton, the three of them set out to discover what facilities existed in the country for survivors of brain injury after they were discharged from hospital. They found there was a club in Birmingham Accident Hospital, run by Philip Lockhart, and one in Nottingham Hospital, where Reg Talbott was a social worker. They found nothing else.

Realising the need, they resolved to form an organisation to work for the benefit of brain injury survivors and their families, setting up a steering committee in 1979 and registering HEADWAY National Head Injuries Association as a charitable trust in 1980.

Improved skills in the ambulance services, accident and emergency departments and in neurosurgery had resulted in the markedly increased survival rate amongst accident victims. Rehabilitation services had not shown similar improvement. Headway resolved to work with the medical profession to achieve better standards of treatment and to provide support groups throughout the country for survivors and their families.

In March 1992 a grant from DHSS enabled Reg Talbott's appointment as Director and in July 1983, 250 people attended the first International Head Injury Conference in London on the busiest day.

Meanwhile in Gloucester, Roger Fitzsimmons was inspired to establish a day centre to assist in long-term improvement, to ease family burdens, to improve social skills and to maintain liaison with hospitals on behalf of those discharged. With his helpers they transformed a semi-derelict bungalow in the hospital grounds. The first Headway House was opened in August 1983 and was an instance success.

Philip Lockhart edited a quarterly newsletter which was distributed widely even to those overseas who had attended conferences and by 1985 there were similar organisations in Australia, Canada, Holland, New Zealand, South Africa and the USA—several of which used the Headway name. As the only cure for brain injury is prevention, much effort was put into pressing for the introduction and wide usage of rear seat belts, helmets for horse and cycle riders, airbags and the provision of cycle tracks.

During the last 10 years, with Ian Garrow as Chief Executive and Nigel Cutts, Rita Rees and David Turner leading the Board of Trustees, Headway has made great progress. The charity led in the establishment of the Neurological Alliance, the Parliamentary Group on Acquired Brain Injury and a European brain injury family organisation.

In 1999, Headway changed its name from HEADWAY National Head Injuries Association to Headway—the brain injury association. Headway has reason to be proud of its achievements in improving the lot of those who have survived brain injuries and of their carers. Much has been achieved, but far more needs to be done under the leadership of Headway's new Chairman Sir William Doughty, Chief Executive Kevin Curley and the Board of Trustees.

APPENDIX 2

EPIDEMIOLOGY OF HEAD INJURY (TRAUMATIC BRAIN INJURY)

In a 1991 study for the Department of Health (1) McMillan and Greenwood state with regard to traumatic brain injury that,

The annual attendance rate of patients at casualty is high (eg 1778 per 100,000), but many fewer of these tend to be admitted (2), estimates in the UK being about 270-310 cases per 100,000 of the population per annum (2,3).

As shown below, extrapolating this figure across Great Britain and Northern Ireland gives the statistic of one million as attending hospital per year.

The majority of these cases will have a less severe injury. One study indicated "minor" head injury in 84 per cent of cases, 11 per cent sustained a "moderate" head injury and 5 per cent were severe or worse (4). Other studies suggest that 7 per cent of admitted cases may be severe or worse (5).

Assuming a population of 60 million in Great Britain and Northern Ireland:

Casualty attendance: 1778 per 100,000 = 1,066,800 in the UK

Number admitted: 270—310 per 100,000—162,000—186,000

Minor head injury: 84 per cent of the number admitted = 136,080—156,240

Moderate head injury: 11 per cent of the number admitted = 17.820—20,460

Severe head injury: 5 per cent or 7 per cent of the number admitted

5 per cent = 8,100—9,300

7 per cent = 11,340—13,020

McMillan and Greenwood do, however, caution that, "Such figures are dependent on criteria for classification; Over estimation of severe injury is easy . . .".

They also quote the "more conservative estimate", suggested by the Medical Disability Society "using criteria which might be more predictive of long term disability". This cites severe head injury as eight per 100,000 = 4,800 Moderate head injury as 18 per 100,000 = 10,800.

The most recent study, that by Thornhill et al (6), looked at the frequency of disability in young people and adults admitted with a head injury over one year to one of five hospitals in Glasgow and estimated the annual incidence. The study indicated that the incidence (1,400 per year in Glasgow, population nearly 1,000,000) is far higher than previously estimated.

This reflects a higher level of unrecognised problems following discharge in a large number of cases of patients admitted to hospital with an apparently mild head injury.

The authors believed that under-appreciation of the frequency of problems after head injury contributed to inadequate services after discharge.

The Royal College of Surgeons in the Report of the Working Party on the Management of Patients with Head Injuries (June 1999) (7), refer to a study by The British Society of Rehabilitation Medicine, stating,

Some 63 per cent of adult patients who sustain moderate head injuries and 85 per cent of patients who sustain severe head injuries remain disabled one year after their accident. Even patients with minor head injuries have problems. Three months after sustaining mild head injuries, 79 per cent have persistent headaches, 59 per cent have memory problems and 34 per cent are still unemployed. Only 45 per cent of patients who have sustained a minor head injury have made a good recovery one year after submission.(8)

Further to this, The National Traumatic Brain Injury Study (February 1998), states that, as a result of a traumatic brain injury,

each year at least 2000 adults suffer serious impairments which remain with them forever. Many of these are people aged under 30, and since for the majority life expectancy is little altered, prevalence is high—between 50,000 and 75,000 in 1990. The residual handicaps and mental changes suffered by young subjects place a huge burden on their families and communities, whilst older survivors may additionally find themselves unable to fulfil their accustomed roles.(9)

The 1996 report, Assessing the Long Term Residential Needs of People with Traumatic Brain Injury, produced by the Nottingham Trent University and Headway (10), estimated the prevalence figure to be much higher at 135,000 by the year 2000.

Clearly, these figures indicate a large population of people who could potentially benefit from rehabilitation in order to return to a productive life. At present, however, there is not effective, systematic approach to collecting data on the incidence and prevalence of traumatic brain injury. Much of the epidemiology data quoted in current reports is still derived from the 1991 Discussion Paper for the Department of Health by McMillan and Greenwood (1).

Some experts have cast doubt on the reliability of the use of Hospital Episode Statistics for traumatic brain injury. These are based on the ICD (International Classification of Diseases) 10 Codes because they seem to be collected by administrative staff after the event. Also there was a dramatic fall in the figures for traumatic brain injury in some regions when the various parts of the UK transferred to using ICD10 from ICD9. Since not all sites transferred during the same year, the sudden drop in numbers was clearly related to the recording of the information not to a change in policy (11).

This opinion is reinforced by Shoumitro Deb, Clinical Senior Lecturer and Honorary Consultant in Neuropsychiatry at the University of Wales College of Medicine, who conducted a study based on data collected from Cardiff Royal Infirmary Accident and Emergency Department's case register on all head injury admissions to hospitals from South Glamorgan between 1 April 1996 and 31 March 1997. Comparing data with that obtained from the Health Authority's central database by using the ICD-10 codes (12). Deb states that,

By using the ICD-10 codes, less than 50 per cent of all head injury admissions could be detected. Anderson et al. (13) found nearly two-thirds of head injuries selected by ICD codes were excluded when the medical records were reviewed. 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 clinical staff.

Without comprehensive epidemiological data it is very difficult to ascertain the extent of the problem. The collection of such data would seen a logical starting point when planning services.

REFERENCES
  (1)  McMillan T, Greenwood R, (1991). "Rehabilitation Programmes for the Brain Injured Adult: Current Practice and Future Options in the UK" Discussion paper for the Department of Health.
  (2)  Jennett B & MacMillan R (1981). "Epidemiology of Head Injury", Brit Med J, 282, 101-104
  (3)  Field J H, (1976). Epidemiology of Head Injuries in England and Wales. London: HMSO.
  (4)  Miller J D & Jones P A (1985). "The Work of a Regional Head Injury service", Lancet 1, 1141-1144.
  (5)  Lewin W, "Head Injuries", BMJ, 1959: 1, 131-134
  (6)  Thornhill et al (2000), Disability in young people and adults one year after head injury: prospective cohort study, BMJ; 320: 1631-5.
  (7)  The Royal College of Surgeons (1999). Report of the Working Party on the Management of Patients with Head Injuries. London: The Royal College of Surgeons, pl.
  (8)  The British Society of Rehabilitation Medicine (1998). Rehabilitation after Traumatic Brain Injury, London.
  (9)  Centre for Health Services Studies University of Warwick (1998). National Traumatic Brain Injury Study. Coventry: Centre for Health Services Studies University of Warwick, p.i.
  (10)  Higham et al (1996). Assessing the Long Term Residential Needs of People with Traumatic Brain Injury. Nottingham: The Nottingham Trent University & Headway, p13.
  (11)  Correspondence from Dr Judith Wardle (Chief Executive of the Children's Head Injury Trust) to Kevin Curley (Chief Executive of Headway—the brain injury association), October 2000.
  (12)  Deb S (1999). "LCD-10 codes detect only a proportion of all head injury admissions", Brain Injury, 13(5): 369-373.
  (13)  Anderson et al (1980). "The National Head and Spinal Cord Injury Survey: design and methodology", Journal of Neurosurgery, 53: 511-18.